Chapter 14. Advance Medical Directives in the Terminally Ill Patient

14.01 Advance Medical Directives; Introduction

14.02 General Values of Writing a Living Will

14.03 Common Law Living Wills

14.03 Common Law Living Wills

14.05 The Patient Self-Determination Act

14.06 Living Will Form Declaration When Terminally Ill

14.07 Form Notice to Health Care Provider

14.08 Health Care Powers of Attorney: In General

14.09 Pros and Cons of Designated Health Care Agents

14.10 Choosing a Health Care Agent

14.11 Determination of Competency/Capacity

14.12 Other Concerns of the Physician

14.13 Decisions of a Health Care Agent

14.14 Advantage of a Combined Document

14.15 Form: Durable Power of Attorney for Health Care

14.16 Do-Not-Resuscitate Orders: In General

14.17 Do-Not-Resuscitate Orders/Difficulties

14.18 Do-Not-Resuscitate Orders/Principles Guiding Decision-Making

14.19 Do-Not-Resuscitate/Hospital Forms

14.20 Do-Not-Resuscitate Orders for Use at Home

14.21 Do-Not-Resuscitate Orders/Special Considerations

14.22 Anatomical Gifts: In General

14.23 Anatomical Gifts; Surrogate Decision-Making

14.24 Anatomical Gifts: Form

14.01 Advance Medical Directives; Introduction

All patients have the legal right to direct their own medical care. Such directives are normally given orally by the patient to the physician after discussing the potential risks and benefits of recommended care, but all too often the terminal disease process makes this impossible, either by intruding on the patientís ability to understand the situation or to communicate decisions to the physician(s). When this happen, the legal right to make decisions remains, but it is forfeited unless the patient has acted beforehand to insure his or her wishes continue to be known to health care providers.

Advance medical directives (hereinafter, "AMD") are legal documents specifically designed to preserve the patientís right of self-determination in health care even when the patient is no longer able to make and communicate decisions. They do this in one of two common ways, although a combination of the two is becoming ever more popular.

The first means is usually referred to as a "living will" or an "instructive directive." In a living will, the individual, referred to by the legal term, "declarant," provides a series of written directives to physicians telling them what care is wanted under various conditions if the declarant has lost the capacity to make medical decisions. By so doing, the declarant, who is usually healthy at the time the living will is written, not only preserves the right to continue to control his or her own personal care in case of incapacity, but also avoids burdening loved ones with unwanted decision-making. This prevents many of the social pressures which tend to foster aggressive medical care far beyond the wishes of most patients.

It sounds easy, but it isnít. Because most living wills are written by patientís who are healthy, they have little ability to predict the conditions which are likely to surround their own death. The best they can do is to try to cover most of those conditions in which mental function is disturbed early, long before death is likely to occur, for these are the situations in which the patient would be deprived of their right and ability to personally direct care for significant periods of time. The conditions in which this is most likely to occur are progressive dementias, like Alzheimerís disease, strokes, brain tumors, permanent unconsciousness, and a few uncommon conditions of the brain, like encephalitis and multiple sclerosis. Unfortunately, these conditions are not covered in most presently available living will forms, leaving most written living wills ineffective in the clinical setting.

The other common type of an AMD is the durable power of attorney for health care (DPAHC). Unlike the living will, which is based on the legal principle of autonomy [the patientís right to direct medical care], the durable power of attorney for health care is based on a very different legal principle -- the right of an individual, legally called the "principal," to name another individual, called the "agent," to make decisions on behalf of the principal.

Unlike the living will, the DPAHC does not require declarants to make statements about their wishes in various clinical situations, but only requires the principal to name specific agents to make decisions for them if they lose the ability to make medical decisions for themselves. This is very easy -- all one has to do is write down: "If I should lose the capacity to make medical decisions, I name (Name of Agent) to be my attorney-in-fact for health care decisions including the right to direct the discontinuation of non-comfort care. Signed: _____________ (Signature of Principal)".

Because appointing an agent through a DPAHC is much simpler than writing a living will, they are very popular, but they are not the best means of protecting the rights of the terminally ill patient. In fact, the best way to protect the rights of the terminally ill individual is to write a combined document. One which combines a living will [now usually called an instructive directive] along with naming an agent to be sure the patientís directives are carried out.

Unlike the advance directives discussed so far, when drafting living wills or combined documents for patients with a known terminal illness one takes a very different approach. When the principal has a known terminal condition, directives like those discussed above addressing conditions other than that already diagnosed in the principal are usually minimized, while more specific directives are given relevant to the likely terminal events which are likely to occur with the principalís specific condition. This generally terns out to be far easier than drafting a living will for a healthy patient, but there are unfortunately no forms readily available to use in this situation.

Without a form to follow, one must be at least a little creative. This begins by discussing the patientís prognosis with the physician to find out what is likely to happen toward the end stages of the disease at the time when the patient is likely to lose the ability to make and relay decisions. Working with the physician, a series of medical decisions which are likely to be required can be developed and discussed with the patient. These, then, become the issues which are addressed in the living will document. [Note: Suggestions for the actual writing of this document are included below.]

14.02 General Values of Writing a Living Will

The value of writing a living will goes far beyond the mere expression of oneís continued right to direct oneís own health care. More importantly, it serves the purpose of fostering the patientís existential desire to continue to control life. In addition, it is of tremendous help to caregivers who are likely to be forced to make decisions for the terminally ill patient who has subsequently lost decision-making capacity.

Making decisions for family members who can be kept alive but not returned to a meaningful way of life through the use of modern technology is difficult, but it is made much easier when the patient has made their desires known beforehand. And, because people find it easier to forsake their own undesired treatment than to make the same decision for others, living wills tend to minimize unwanted therapy while removing the family from emotion-laden decision-making. This in turn serves to minimize the unwarranted guilt frequently engendered by family members by even the most logical decision to stop a loved-one's therapy.

Physicians also gain the same benefit of guidance, but, in addition, are aided by the living will changing the standard of care upon which they would be judged if they were later confronted by a claim of having given inappropriate care. Without direction from the patient, standard medical care is skewed to the maintenance of life. When directed otherwise by the patient, however, this standard of care changes to require the physician to honor the patient's wishes, thereby eliminating the requirement for "standard" (agressive) care. Because malpractice litigation requires a finding the physician deviated from standard medical care, substituting this new minimally aggressive standard allays the physician's fear of legal or professional repercussions for withholding or withdrawing therapy. Without this protection, physicians may feel forced to continue treatment whenever the patient is incapable of refusing its continuation.

Another advantage of writing a living will is that it gives the patient an ideal opportunity to initiate a discussion with his or her physician about issues involving death with dignity. Such discussions are usually worthwhile and welcomed by both parties, although seldom initiated by either out of fear of embarrassing the other. By initiating such discussions, the declarant can find out if his or her physician has moral objections to withholding or withdrawing therapy in specific situations and such differences in philosophy can be discussed while the patient still has options available. If unresolvable conflicts of belief incapable of compromise are revealed at this time, the patient retains an option to choose another physician who is more compatible with his or her views before a decision requiring situation arises.

14.03 Common Law Living Wills

Unfortunately, most people, including physicians and attorneys, have come to associate the concept of a living will with a specific statement which is suggested in the written laws of the state and commonly referred to as the state "statutes." These "statutory living will forms" are developed by the state legislature and are intended for use by all residents of the state. But statutory living wills are only half of the whole. Living wills can also be drafted under what is referred to as the "common law" of the state -- that law which has been developed by the state courts as opposed to the state legislatures. Under state common law, the individual or patient, by writing and executing a written living will document, can refuse any medical care under any situation imaginable -- far beyond the scope of the typical statutory living will document. In addition, the individual can request any medical care, although unlike refusals, physicians need not honor a request if it is felt to be unethical or illegal. For example, the physician need not honor a request for assisted suicide even though he or she must honor a refusal to allow the giving of artificial nutrition.

Most carefully drafted living wills contain both the statutory provision of the state and additional common law provisions which further identify the patientís wishes as to desired treatment if and when they lose the ability to make medical decisions for themselves.

14.04 Terminating Care Under the Common Law

Although most state statutes only authorize discontinuing aggressive medical care under narrow situations, the common law accepts the patientís right to refuse any life-support systems in any situation as long as the decision is made at a time when the patient has decision-making capacity. Because the common law also accepts the right of the patient to pass on directions through a living will, the common law also provides a way for the patient to refuse any life-support system in any situation even after the patient has lost decision-making capacity.

In the usual living will writen by a healthy principal, the provisions which are most important are those which come under the common law part of the document, for the state statute coverage is usually very limited. With few exceptions, these state forms only cover "terminal illness" and "permanent unconsciousness," which, because of the way they are defined, are highly limited in clinical applicability. In contrast, it is the common law coverage for such conditions as Alzheimerís disease and other dementias, brain infections, tumors, and strokes that are likely to be clinically controlling.

In contrast, when we are dealing with patients who are in the end stages of a terminally condition, the statutory part of the living will may in fact be important. But even when dealing with a known terminal illness there are many situations in which it is the common law provisions which are clinically controlling, especially when it comes to nutrition and hydration. This is particularly so because under many state statutes the living will is not empowered to allow the patient to direct the forsaking of artificial nutrition and hydration, while under the common law this right is almost universally upheld throughout the states.

14.05 The Patient Self-Determination Act

Many patients and their families have recently complained about being coerced over (or into) signing an AMD upon admission to a hospital or nursing home. This is unfortunate, for the governmentís requirement that AMD be discussed at the time of admission to an institution is not intended to force the signing of an AMD in any way. In fact, it is generally thought not to even be the most appropriate time for initiating a discussion, but was chosen simply because it is the one time when the administrative procedures of an institution invariably comes in direct contact with the patient and/or the family.

As to being inadvertantly coerced into signing a living will, the patient can and should refuse to sign, unless he or she has previously considered and discussed advance directives and decided what is desired. On the other hand, if the patient feels coerced into executing a power of attorney for health care because it is the easiest way "to get it over," this is, in the opinion of the author, still worse, as discussed below.

But before getting too upset at the Patient Self-Determination Act and its funny timing, consider the following. Although the Act has had little effect on the execution of AMD and their clinical use, the very fact the Act exists has had a powerful positive influence on physician acceptance of the patientsí rights to control their own care. It is hard to characterize or prove, but almost all people working in Bioethics have concluded physicians are becoming more responsive to the directions of the patient even at a time when other changes in health care delivery are increasingly interfering with patient autonomy.

In addition, consider that the routine introduction of the issue of AMD by uninterested third parties in an admission office can often serve to initiate badly needed discussions between the patient, family and caregivers in a much less threatening manner than when introduced by the physician or a family member. Such non-threatening opportunities to find out what the patient is thinking come few and far between in many family settings when patients are not the type to freely share their thoughts with others.

14.06 Living Will Form Declaration When Terminally Ill

The following is a suggested form which can be used by a terminally ill patient who wants to leave directions about future medical care. Commentary on the reasons behind many of the entries is included as notes following the section. At the end is a provision for naming an agent to help see the patientís wishes are followed. There are also specific provisions to be added related to other aspects of terminal care discussed in this book. Note that the notice provision at the beginning of the document and the first article are not actually part of the living will proper, but are suggested by the author to inform a physician or other responsible person who reads the document in the future of the circumstances under which the living will was written. This helps insure the health care provider will honor the directives contained in the body of the document.

Note that in the form, I have used (parenthesis) to indicate information which should be inserted; [brackets] to suggest possible additions, and [brackets separated by a slash]/[] to indicatesome potential choices. I have capitalized enclosed words where the words to be added should be capatalized. At the end I have used the legal witnessing procedure suggested in Connecticut. The procedure prescribed in the state in which the living will is being executed should be substituted if known. If not known, it can be signed just the way form is written. Because living wills are good evidence of the patientís desires, it will almost certainly be followed under the common law even if it isnít signed exactly as the state statute directs.

LIVING WILL FORM DECLARATION

NOTICE TO DECLARANT

THIS IS AN IMPORTANT LEGAL DOCUMENT. BEFORE EXECUTING THIS DOCUMENT, YOU SHOULD BE AWARE OF THESE IMPORTANT FACTS:

(a) THIS DOCUMENT IS INTENDED TO GIVE SPECIFIC GUIDANCE TO POTENTIAL DECISION-MAKERS, YOUR FAMILY, AND HEALTH CARE PROVIDERS AS TO THE KINDS OF MEDICAL TREATMENT YOU WOULD WANT EMPLOYED OR FORSAKEN UNDER SPECIFIC MEDICAL CIRCUMSTANCES IF YOU ARE NO LONGER ABLE TO MAKE SUCH DECISIONS FOR YOURSELF. IF YOU SO CHOOSE, THIS DOCUMENT ALSO GIVES YOU THE OPPORTUNITY TO DESIGNATE A HEALTH CARE AGENT WITH SPECIFIC POWERS TO MAKE ADDITIONAL HEALTH CARE DECISIONS ON YOUR BEHALF IF REQUIRED. DIRECTIVES MADE HEREIN ARE INTENDED TO SERVE BOTH AS A SOCIAL AID TO THE DECISION-MAKERS AND AS A LEGAL DOCUMENT TO ASSURE YOUR CONTINUED RIGHT OF SELF-DETERMINATION IN HEALTH CARE TO THE EXTENT ALLOWED UNDER THE LAWS OF THE STATE IN WHICH YOU WILL RECEIVE THERAPY.

(b) IF YOU DESIGNATE A HEALTH CARE AGENT IN THIS DOCUMENT AND THAT PERSON AGREES TO SO SERVE, THAT PERSON IS EXPECTED TO ACT CONSISTENT WITH YOUR WISHES AS EXPRESSED HEREIN. IF YOU FAIL TO EXPRESS YOUR WISHES WITH REGARD TO PARTICULAR CIRCUMSTANCES HEREIN, YOUR AGENT SHOULD FIRST MAKE HEALTH CARE DECISIONS IN ACCORDANCE WITH HIS OR HER KNOWLEDGE OF YOUR BELIEFS FROM THE PAST AND, IN THE ABSENCE OF SUCH KNOWLEDGE, TO ACT IN YOUR BEST INTERESTS. IF YOU CHOOSE NOT TO NAME A AGENT, UNDER YOUR RIGHT OF SELF-DETERMINATION IN HEALTH CARE YOUR HEALTH CARE PROVIDERS WILL HAVE A DUTY TO ACT CONSISTENT WITH YOUR INSTRUCTION HEREIN EXPRESSED TO THE EXTENT PERMITTED BY LAW. IF THEY DO SO, THEY ARE ALSO HEREIN PROVIDED WITH IMMUNITY FROM CLAIMS OF MALPRACTICE OR PROFESSIONAL MISCONDUCT FOR HONORING YOUR DIRECTIVES. IT IS IN YOUR BEST INTEREST TO DISCUSS YOUR DESIRES AND BELIEFS WITH A PROPOSED DESIGNATED HEALTH CARE AGENT BEFORE NAMING SUCH AGENT TO BE SURE THE AGENT IS WILLING TO UPHOLD YOUR WISHES. IT IS ALSO DESIRABLE TO DISCUSS THIS DOCUMENT WITH YOUR PHYSICIAN TO BE SURE HE OR SHE DOES NOT HAVE ANY PERSONAL CONFLICT WITH FOLLOWING ITS DIRECTIVES.

(c) THIS DOCUMENT WILL REMAIN VALID AND IN EFFECT UNTIL AND UNLESS YOU AMEND OR REVOKE IT. YOU MAY AMEND OR REVOKE THE DECLARATION AT ANY TIME BY DEFACING (AND REPLACING, IF DESIRED) THE ORIGINAL COPY AND NOTIFYING YOUR DESIGNATED HEALTH CARE AGENT, IF ANY. THIS IS DONE BY CROSSING OUT THE FRONT SHEET AND SIGNATURE PAGES, WRITING ON THE SIGNATURE PAGE "I REVOKE" AND SIGNING THE REVOCATION.

(d) YOUR NAMED HEALTH CARE AGENT WILL BE GIVEN THE SAME RIGHT AS YOU HAVE TO EXAMINE YOUR MEDICAL RECORDS AND TO CONSENT TO THEIR DISCLOSURE TO OTHERS FOR PURPOSES RELATED TO YOUR HEALTH CARE OR INSURANCE UNLESS YOU LIMIT THIS RIGHT IN THIS DECLARATION.

LIVING WILL DECLARATION

OF

(NAME IN CAPS)

I, (NAME), with a present address of (Address), being of sound mind and after considering the notice above and other due consideration, do make, publish and declare this to be my Living Will Declaration, hereby revoking any previous living will made by me.

ARTICLE FIRST

PERSONAL STATEMENT REGARDING MY LIVING WILL

I am aware of the strengths and limitations of living wills and the fact that they serve as evidence of my desires even when their legality is not guaranteed by a living will statute.

I therefore make the provisions included in this document to give clear and convincing evidence of my desires to my family, physicians, a court, or any other person or facility responsible for my care so they shall not have to question what I would choose for myself if I were still able to do so. By so doing I hope to also relieve any guilt those close to me might feel in permitting or choosing to discontinue therapy which I would perceive as only prolonging my death, not my life.

Although recognizing the social goals, I do not want to diminish the legal aspects of this document. As an individual I am entitled to the right of self-determination in health care under the constitutional right to privacy and the common law right of informed consent in addition to rights granted by state statutes. This right is not extinguished by incapacity. I therefore demand that the directives contained herein be respected by my physicians, family, and the courts to the full extent possible under the existing law at any time that I shall be unable to make such decisions for myself as if they were my own decisions made at that time.

[Note: The "notice to declarant" and "Article First" are not primarily intended for the declarant's initial benefit, but to insure health care providers the declarant had been adequately informed of the significance of the living will before it was executed.]

 

 

 

ARTICLE SECOND

DIRECTIVES/STATUTORY TERMINAL CONDITIONS

The directive in this article shall be operative if the time comes when my attending physician determines (a) I am no longer capable of making and communicating decisions regarding my own medical care and (b) I am eligible for coverage under the living will statute of the state in which I am receiving treatment.

DOCUMENT CONCERNING WITHHOLDING OR WITHDRAWAL OF LIFE

SUPPORT SYSTEMS.

If the time comes when I am incapacitated to the point when I can no longer actively take part in decisions for my own life, and am unable to direct my physician as to my own medical care, I wish this statement to stand as a testament of my wishes.

"I,.................................. (Name), request that, if my condition is deemed terminal or if it is determined that I will be permanently unconscious, I be allowed to die and not be kept alive through life support systems. By terminal condition, I mean that I have an incurable or irreversible medical condition which, without the administration of life support systems, will, in the opinion of my attending physician, result in death within a relatively short time. By permanently unconscious I mean that I am in a permanent coma or persistent vegetative state which is an irreversible condition in which I am at no time aware of myself or the environment and show no behavioral response to the environment. The life support systems which I do not want include, but are not limited to:

Artificial respiration

Cardiopulmonary resuscitation

Artificial means of providing nutrition and hydration

(Cross out and initial life support systems you want administered)

I do not intend any direct taking of my life, but only that my dying not be unreasonably prolonged."

Other specific requests:

"This request is made, after careful reflection, while I am of sound mind."

................................................ (Signature)

........................ (Date)

[Note: The above is the prescribed statutory statement for the State of Connecticut, the authorís residence. If the living will is being executed in another state which authorizes a similar declaration, substitute the authorized statement regarding terminal illness and/or permanent unconsciousness for the above statement.]

 

 

 

ARTICLE THIRD

DIRECTIVES/NON-STATUTORY TERMINAL CONDITION

The directive in this article shall become operative if the time comes when my attending physician determines (a) I am no longer capable of making and communicating decisions regarding my own medical care and (b) I am in a terminal medical condition as defined below but not under the definition of a living will statute in the state in which I am receiving treatment.

If the time comes when I am incapacitated to the point when I can no longer actively take part in decisions for my own life, and am unable to direct my physician as to my own medical care, I wish this statement to stand as a testament of my wishes.

Should I have a terminal medical condition as defined below, I direct that life support systems be withheld or withdrawn and I be allowed to die and not be kept alive through their use.

"Terminal condition" means an incurable or irreversible medical condition which, within reasonable medical judgment, 1) would produce the patient's death without the application of life support systems and 2) even with the use of life support systems, precludes the patient from (a) ever regaining decision-making capacity or (b) ever regaining decision-making capacity without unacceptable pain.

[Note: Article Third is intended to be used when the state does not have a specific living will declaration covering terminal illness or when the nature of the patientís illness does not qualify under the state statute. It would normally not be required in patients who have cancer unless it involves the brain. It would be reasonable to include in any living will written by a patient who has a terminal disease other than cancer to be sure the living will covers their condition.]

ARTICLE FOURTH

DIRECTIVES/CHRONIC, PROGRESSIVE, IRREVERSIBLE CONDITION

The directives in this article which specifically address my diagnosed illness shall only become operative if my attending physician determines I am no longer capable of making or communicating decisions regarding my own medical care. Any directives in this article shall be additive to previous directives in this declaration in Articles Second and Third and shall be subject to interpretation by my Health Care Agent, if I have named one below.

Statement: As of this date, ________________, ____, (Date) I, ___________________________, (Name) have been diagnosed by my physician, ____________________________ (Name of Physician), of ________________________________________ (address) as having the following disease or condition which I understand to be chronic, progressive, and irreversible, even though progression may not be observable from day-to-day: _____________________________________

(Name of Disease or Condition).

At the present time I am capable of making my own health care decisions, but I fear my condition or some intervening complication or condition shall make me unable to direct such care either because of (i) mental incapacity or (ii) the physical inability to make my directives understood or to insure they are honored.

I am particularly worried because I understand the disease or condition I suffer with can lead to a situation in which further medical care will only prolong my death without the hope of returning me to what I consider to be a meaningful way of life.

I, ____________________________,(Name), do therefore direct that life support systems be withheld or withdrawn and I be allowed to die in peace if I am no longer able to make and communicate decisions for myself and my attending physician and one other physicians trained in _______________________ (Fill in name of appropriate specialty) determine there is no reasonable chance that use of such life support systems would allow me to regain decision-making capacity.

ARTICLE FIFTH

ADDITIONAL DIRECTIVES

The following directives shall apply if any of the above Articles Second, Third or Fourth are in effect.

5A. I direct that under this article the term "life support system" or similar term shall include not only mechanical or other artificial means to sustain, restore, or supplant a natural vital function, but shall also include the following initialed items:

( ) transfusions, antibiotics, heart regulators, anti-cancer drugs, anti-inflammatory medication, or any other drugs administered to control a disease process;

( ) nutrition and/or hydration given intravenously, through a tube or any other means other than voluntarily taken by mouth;

( ) Emergency resuscitation for heart or lung failure;

( ) Surgery;

( ) Invasive or investigational procedures, including intubation and needle punctures.

[Note: Most people believe that once life is meaningless, all care should be stopped, making it appropriate to initial all of these statements. Some people, however, have specific feelings about stopping certain types of therapy, like antibiotics, blood transfusions, or artificial nutrition and hydration, in which case these provisions should go uninitialed.]

5B. I realize some of the terms used in this article may be difficult to interpret. For this reason I direct that if I have appointed a Health Care Agent in Article Sixth of this living will declaration, his or her interpretation of any term shall be held conclusive of my meaning and beseech physicians, family, friends, guardians, and administrators of any health care facility in which I reside to honor my directives and those of my agent named herein. In the absence of such a named agent, I request physicians and surrogate decision-makers to act in good faith in following the most probable meaning of my directives.

5C. I direct that any legal requirement that I receive comfort care under any statute shall be limited to pain medication and such other therapy or procedure which clearly is required for my observable personal comfort, not the comfort of those around me.

5D. I do not intend any direct taking of my life, but only that my dying not be prolonged. Nevertheless, nothing in this document should be interpreted to preclude my physicians from undertaking medical or surgical treatment primarily intended for the relief of my pain or discomfort, even if such treatment runs a significant risk of hastening the specific time of my death.

The following are suggested provisions the patient might want to add depending on the specific circumstances:

5E. I direct that if at all possible, I would like to live the rest of my life and to die at home. If this is not possible and hospitalization is required or if I must be treated in a nursing home, I request that no additional therapy be undertaken except to relieve my pain or suffering.

5F. I direct that if at all possible, I would like to live the rest of my life and to die at home. If this is not possible and institutionalization is required, I would prefer being treated at a [hospital]/[nursing home]/[hospice] facility, preferably [fill in if desired.]

5G. [I know that I am pregnant]/[I believe I might be pregnant]. Even so, I still want life support systems to be withheld or withdrawn [unless a medical evaluation determines the fetus is viable and could, with a reasonable degree of medical certainty, develop to live birth with continued application of such life support systems.] [Note: there are many alternative provisions that might be appropriate. See the authors text, Advance Medical Directives, published by The West Group of legal publishers.]

5H. I would not want any health care provider to worry about being sued for following my directives. I therefore hereby bind myself, my heirs and any personal representatives to indemnify all participants in the making of this directive or in honoring its directives, whether it be a health care provider, my spouse, a relative, friend or any other person, including a member of an emergency response team, against any responsibility in any form, legally, professionally or socially, for complying with my expressed wishes.

5I. I direct my health care providers to specifically ignore the desires of (Name) who does not share my wishes about how I should be treated when I am no longer able to make decisions for myself.

5J. I request this document be given consideration equal to that of a regular will and testament distributing assets. Unless my health care agent or my attending physician can verify I have revoked this document orally or in writing, it should be held as valid upon its presentation.

5K. If under the terms of these directives it would be appropriate to withhold life support systems, I request a letter to that effect be left at my bedside by the attending physician with a copy of this living will to inform any medical emergency personnel of the situation and to assure them all the immunity possible under the laws of the jurisdiction for following my directives in good faith.

5L. I request the holder of this declaration or the holder of any copy of this declaration carry the moral obligation to give such document to any physician in charge of my care who is not aware of its existence.

5M. I hereby make known a general desire to be allowed to die at home. Please honor any future request to be discharged from a facility at a time when I am dying even if my decision-making capacity is limited as long as my family is willing to provide required comfort care. [Note: The declarant may want to indicate a desire to be placed under hospice care at home to help insure more aggressive palliative care.]

5N. I do not want to be physically restrained even if this may result in some risk of falling or otherwise being injured. Under these circumstance, those tending to me shall not be held responsible for any ill effects that may result.

A patient with AIDS might consider the following provisions:

5O. If my attending physician, after obtaining appropriate consultation, concludes I am unlikely to ever leave the hospital, I request that all life-support systems be discontinued and care be limited to providing for my comfort.

5P. If I am receiving hospice care and a new method of therapy is made available which holds the promise of reversing my mental incapacity, I request it be given to me within the hospice if possible. If not possible, please have me moved to an alternative facility where I may receive the new therapy.

A patient who is considering the authorization of the use of terminal sedation should consider the inclusion of the following provisions:

5Q. I do not want to end my life in pain or with severe suffering. I have discussed this with my family and my health care providers and expressed acceptance of the concept of terminal sedation if required. I therefore direct if the time comes that my health care provider(s) believe the only way to control my pain and suffering is to keep me asleep with medications, I direct that it be done.

5R. If a decision is made in the course of my therapy that the only way to effectively treat my pain and/or suffering is to keep me asleep with medications, I direct that after this is undertaken and I have subsequently lost the capacity to make medical decisions, no relative, agent, health care provider, or other individual shall make or enforce a surrogateís decision to stop terminal sedation.

A patient who is considering voluntary terminal dehydration should consider the inclusion the following provisions:

5S. If I have made a decision to voluntarily stop taking oral nutrition and hydration as a means of controlling my life expectancy, and have acted in accordance with that decision, I direct no effort be made to force oral nutrition and hydration or any form of artificial nutrition and hydration, including intravenous fluids or any form of tube feeding.

5T. I direct if food and water are left at the bedside and I do not voluntarily attempt to swallow them at a time I am capable of doing so, that this action should be taken as a decision on my part to voluntarily refuse nutrition and hydration.

5U. If I have voluntarily refused nutrition and hydration, at no time should I be given small quantities of food or fluids beyond that required to care for my mouth locally. No action on my part shall be viewed as indicating thirst or hunger other than a request on my part for food or fluids.

5V. If as a result of my refusal of oral nutrition and hydration I lose my capacity to make medical decisions, I direct my rejection of food and fluids be honored by my family, friends, health care providers and agents, if any.

ARTICLE SIXTH

DESIGNATION/HEALTH CARE AGENT

A. I hereby authorize my [(relationship)]/[friend], (NAME)

with a present address of (address) as my Health Care Agent, to implement this, my Living Will Declaration, and to accept, direct responsibility for, and/or refuse hospitalization and/or treatment on my behalf if I am incapable of so acting for myself.

B. In addition, I request my Health Care Agent be recognized as the individual responsible to act on my behalf in all health related matters including, but not limited to, all of the following:

[Note: Generally include all the following unless there is a specific reason not to.]

1. Serving as final decision-maker regarding any uncertainties or ambiguities which may exist in or related to this declaration.

2. Taking primary responsibility for making this document immediately known and available to any physician who is in charge of my care wherever care is being given.

3. Acting as the final arbiter of fact if any other person suggests I may have rescinded this document.

4. Serving as the designated guardian or conservator of my person if one is required.

5. Accepting the responsibility to see that the physician and facilities involved in my care honor my directives herein to the full extent provided under statutory or common law, including the right to transfer my care to alternative physicians or facilities, within or without the state.

6. Deciding if I would have wanted those life support systems herein addressed or any additional systems not specifically enumerated herein withheld or withdrawn under circumstances not specifically covered by my living will declaration.

C. If the person I have named above refuses or is unable or unavailable to act on my behalf, or if I revoke that person's authority to act as my Health Care Agent, I authorize as his or her replacement my [(relationship)]/[friend], (NAME) with a present address of (address) to implement my Living Will Declaration as my substituted Health Care Agent and to act in his or her stead and with the same powers conveyed.

D. I understand the full import of this designation of a Health Care Agent, and am emotionally and mentally capable of making this declaration. It is my intention this appointment shall be honored by designated alternative health care agents, my family, relatives, friends, physicians, attorneys and in all court proceedings as the final expression of my legal right to refuse medical or surgical treatment, and I accept the consequences of such a decision.

E. I understand I have the right to revoke the appointment of the persons named above to act on my behalf at any time by communicating that decision to the agent and/or my health care provider. If that is my intention, if I am still capable to do so, I will cross out and initial this article in the original living will document which can be identified because it is signed in colored ink.

F. If I am being treated in a state which does not recognize my directives herein in the form of a living will but does recognize the power of an attorney in fact to direct the forsaking of non-comfort directed medical care, the above appointment of a designated agent shall serve as the appointment of an attorney in fact with authority to make health care decisions including the withholding or withdrawing of life support systems based on my desires as indicated in this declaration.

G. If I have named a physician as my agent, I direct if this conflicts with the law of the state in which I am being treated, he or she shall [act as my agent and transfer my care to other physicians for medical decision-making]/[continue to care for me as a physician and have the next alternative act as my agent].

[Note: Even if the state AMD statute does not provide for the naming of a health care agent as part of the document, it will still almost always be valid under the common law.

It is important the person designated to help interpret the directives have a knowledge of the declarant's desires and share their general beliefs about health care at the end of life. If there is no one on whom they can rely to fulfill this function, the declarant may be better off relying on the medical profession to honor the directives than designating a health care agent.

Even though many states refuse to allow the attending physician to act as a health care agent, most do allow this to happen if the physician turns over primary care of the patient to another physician.]

IN WITNESS WHEREOF, I have subscribed my name to this my LIVING WILL DECLARATION, [including the designation of a HEALTH CARE AGENT] in the presence of the persons witnessing it at my request this (#)th day of (Month), (Year), at (#) [a]/[p].m. at (Name of Town or City and State)

Sign in colored ink. ____________________________

Copy only in black.

____________________________

Typed Name of Declarant

 

____________________________

Typed Name of Person

Signing for Declarant (If any)

 

WITNESSETH:

The foregoing instrument was signed published and declared by (NAME OF DECLARANT), the declarant, to be [his]/[her] Living Will Declaration, in our presence, and we, at [his]/[her] request, and in [his]/[her] presence and in the presence of each other have hereunto subscribed our names as witnesses this (#)th day of (Month), (Year), at (Name of Town or City and State]

Witnesses sign here indicating their residency:

___________________________ residing at ________________________

Town or City/State

___________________________ residing at ________________________

Town or City/State

AFFIDAVIT

STATE OF (STATE) )

) ss: (Name of Town or City) (Month, Day, Year)

COUNTY OF (COUNTY))

Then and there personally appeared the within named (Name of First Witness), (Name of Second Witness) and (Name of signer of Oral Declaration for Declarant, if any) who being duly

sworn, individually depose and attest that:

(1) The declarant is personally known to them and they believe the declarant to be at least 18 years of age and of sound mind;

(2) They are at least 18 years of age;

(3) To the best of their knowledge, at the time of the execution of this living will declaration, they:

(A) Are not related to the declarant by blood or marriage;

(B) Would not be entitled to any portion of the declarant's estate by any will or by operation of law under the rules of descent and distribution of this state;

(C) Are not the attending physician of declarant or an employee of the attending physician or an employee of the hospital or skilled nursing facility in which declarant is a patient;

(D) Are not directly financially responsible for the declarant's medical care;

(E) Have no present claim against any portion of the estate of the declarant; and

(F) Are not a designated agent under the declaration;

(4) That they witnessed the execution of the within Living Will Declaration by the within named Declarant [or signer for an oral declarant]; that said Declarant subscribed said Living Will Declaration and declared the same to be [his]/[her] Living Will in their presence; that they thereafter subscribed the same as witnesses in the presence of said Declarant, and in the presence of each other and at the request of said Declarant; that the said Declarant appeared to them to be of full age and of sound mind and memory and that they make this affidavit at the request of the said Declarant, (DECLARANT'S NAME)

Witness 1: _____________________________

Witness 2: _____________________________

Signer for Declarant, if any: _____________________________

{Appropriate language indicating the swearing to the above affidavit as is customary for notarization in the state in which the document is to be signed}

 

Seal:

Subscribed and sworn to before me

this # day of (Month) , (Year).

__________________________________

Notary Public

FOR USE IN A NURSING HOME OR OTHER EXTENDED CARE FACILITY:

I hereby witness this living will and attest that I believe the declarant to be of sound mind and to have made this Living Will Declaration willingly and voluntarily.

Witness ____________________________ *

*Medical director of skilled nursing facility, staff physician not participating in care of the patient, or chief of the health care facility.

The original signed declaration will be kept at: (place). Copies will also be given to: (Names of people).

[Note: If for some reason it is difficult to have the living will witnessed or notarized, have it executed without the witnesses and/or Notary Publicís signature. You may have it witnessed later by just indicating to the witnesses that it is your signature and having them sign. If it is never witnessed, it is still likely to be valid under the common law as indicating your desires.]

14.07 Form: Notice to Health Care Provider

When an AMD is written, it is important to notify health care providers of its presence. The following form may be used to do so.

NOTICE TO HEALTH CARE PROVIDER

To: (Name of Health Care Provider)

Address: (Address)

From: (Declarant's name)

Date: (Date)

This is to inform you I have recently executed a [Living Will]/[Power of Attorney for Health Care]/[Do-Not-Resuscitate Order]/[Designation of Anatomical Gift] a copy of which is enclosed for your records. [We have previously discussed my desires to execute such document(s).]

As part of this document, I have appointed the following Agent to speak for me if I am unable to make decisions for myself:

Name of Agent: (Name)

Address: (Address)

Telephone Number(s): (Work and home numbers)]

I would appreciate your reviewing the enclosed and contacting me directly if you would have any difficulty honoring my requests in a situation addressed by the document.

Although I would not hold you legally responsible, I do ask if the time comes when you are aware I am or am likely to become incapable of making medical decisions for myself, that you will give a copy of [this]/[these] documents to my attending physician [if that is other than yourself.]

Sincerely,

 

 

(Name)

14.08 Health Care Powers of Attorney: In General

As mentioned in the introduction, every state has passed a special law which allows one person, called the "principal," to execute a legal document, called a "power of attorney," which designates another person, called the "agent" or "attorney in fact," to make decisions for the principal. Once being granted the power of attorney, decisions of the agent are legally viewed as the principal's decisions.

A traditional power of attorney, however, is limited in that it only allows the agent to make decisions the principal could make if present. Therefore, if the principal loses the capacity to make decisions, the agent's power also ceases. This makes traditional powers of attorney inappropriate for medical decision-making because the agent would lose power to make decisions at the same time the principal lost decision-making capacity.

To correct this problem, laws have been passed which allow the agent to maintain decision-making powers even when the principal loses the ability to make decisions. Such documents are called "durable powers of attorney," because the power endures incapacity of the principal, the agent maintaining decision-making authority when the principal becomes incapacitated. [But not after death.] These durable powers of attorney are usually used for financial purposes to allow agents to continue the work of the principal after they have become incapacitated.

Although durable powers of attorney may be expanded by state law to allow the agent named in the document to also make health care decisions, most states prefer a separate document called a "Durable Ppower of Attorney for Health Care (DPAHC) be used. In this case, the person named is then usually referred to as a "Health Care Agent."

For many patients using a DPAHC seems like a much easier way of dealing with decisions about life support systems than writing a living will, but there are many problems even when used by patients who are known to be terminally ill. That is why the author prefers use of a living will, often with a provision naming an agent to see the desires of the patient be carried out, as provided in the form above.

14.09 Pros and Cons of Designated Health Care Agents

Many commentators believe powers of attorney for health care are preferable to living wills. They tend to point out the following:

1) An agent is likely to be better informed about an exact clinical situation requiring a decision than is the principal, who has to make decisions days, weeks, or months before the exact situation arises. This theoretically means the agentís decision should be better because it is made at the time it is required than a decision previously written by the principal which had to have been nased on incomplete information.

2) Naming an agent prevents critical decisions from being made by a relative whom the principal considers untrustworthy or uncommitted to advancing the principalís own values and desires.

3) Physicians relying on health care directives of a personally designated and legally recognized agent will be less worried about legal reprisals or questions of professional misconduct than when dealing with a living will.

4) Naming an agent resolves uncertainty about who is authorized to consent for the incapacitated patient, thereby eliminating the physician's problem when relatives are in disagreement or when the family disagrees with the physician(s).

5) Naming an agent gives doctors someone to talk to, someone who is empowered to make decisions, surmounting the problem of interpreting by guesswork the often vague terms of a living will.

6) Naming an agent allows decision-making even when the patient's desires were ambiguous, inconsistent, or otherwise not clearly expressed or did not take into account unforeseen developments.

[Note that while all of these may be true, they are also true of a combined document as suggested above in which the agent acts in compliance with the patientís stated directives.]

A seventh advantage which may not fit with a combined document is that under the law, a patient needs less mental capacity to name an agent than to write a living will.

This may be an advantage if the patientís capacity is in question. The theory is that it is much easier for the patient to remember which relative or person he or she has trusted over a lifetime than to deal with new specific medical conditions and therefore the naming of an agent requires less mental ability than writing a living will.

Those who, like the author, question the use of a "naked" DPAHC; i.e., one without an instructional directive, point out the following in favor of a living will or combined document:

1. In many situations, the power of attorney grants life and death decision-making to an agent who stands to gain from the self-interested exercise of power. Such conflicts of interest are against general legal ethics.

2. Family members who are likely to be named as agents are frequently overwhelmed by grief or responsibility and unable to make decisions. This is particularly troublesome because agents have no requirement to act under the law of agency. This makes it very difficult for physicians when the named agent becomes indecisive. In contrast, the directives in a living will are to be followed by all physicians, thus allowing substitution for an undecisive decision-maker.

3. Studies have shown that in the absence of an instructive directive, families are very poor predictors of what a patient would decide. Therefore, even though the agent's decision is legally binding because it is considered that of the patient, the physician is likely to be directed to take action different than what the patient would have wanted.

4. Family members are more reluctant to terminate a relative's care than they are to terminate their own care. Relying on an agent is more likely to result in more aggressive and more prolonged [probably unwanted] care than use of a carefully written living will directive.

5. Many people do not have an individual relative or friend they would be comfortable with as an agent to make health care decisions.

6. The fact an agent's decisions are considered those of the patient relieves legal liability, but does not conform to the concept of self-determination in health care. Naming an agent without giving direction essentially waives this right.

7. An agent may not be available in time of need.

8. A patient who has designated and instructed a proxy agent may undergo a change of heart and find it emotionally difficult to communicate this desire to make a revocation. Changing a living will would not evoke the same emotional problems.

9. A person who is under coercion when designating an agent may find it more difficult to revoke than a living will executed under coercion because the latter can be done in private.

10. Because the DPAHC is so easy, it gives the principal a false sense of security and accomplishment relieving him or her from undertaking the difficult task of deciding what would actually be desired in various clinical situations. While this may seem favorable for the principal, it actually results in loss of autonomy, for it fosters continued care whenever a difficult decisions must be made.

11. DPAHCís are likely to place guilt on a single individual, often the one the principal would least like to hurt. This is much less likely to happen if decisions are made by consensus of the interested parties -- family, friends, and health care providers.

12. The execution of a DPAHC can produce family conflict. What happens within the family when the named agent is a different sibling than the one who is the primary care giver? When two of three siblings are named to be co-agents? When a husband or wife names a child to be the agent and not the spouse?

13. Agency can produce major problems for the physician who firmly believes the decision made by a single agent is wrong. It is much easier to accept a "wrong" decision agreed to by multiple members of a patientís family and friends.

14. In the absence of an instructional directive, if family members disagrees with an agentís directives, they are likely to challenge the agentís decision in court. [Argument for combined document.]

[Note: For a more thorough discussion of problems which result from durable powers of attorney for health care, the reader can refer to the authorís article in The Quinnipiac Probate Law Journal 12:3:305-342 (1998).]

14.10 Choosing a Health Care Agent

Based on the considerations noted above, reliance on sympathetic family members as agents may not be the most appropriate. The primary role of the agent is to assist the principal to maintain both dignity and autonomy. To do this, the agent may be required to review medical records, obtain a physician qualified to give a second opinion, delay procedures when informed consent is in doubt, delay undesired hospital discharge, and forbid any unwarranted use of the patient for experimental or teaching purposes without the patientís specific knowledge and permission.

Such a person should be someone who will not be intimidated in the health care setting, someone known well by the principal, someone who is aware of the principalís values, and who is not afraid to speak up and be assertive on the principalís behalf. The agent must be comfortable abiding by the principalís wishes, and prepared to carry them out without imposing his or her views.

In addition, the following qualifications should be considered before choosing an agent, for it requires a certain nature and ability to act objectively and effectively. Most importantly, an agent should be a person who is capable of acting when decisions must be made and one who would be able to direct the discontinuation of life support systems without fearing later guilt for making this most difficult decision on the principalís behalf.

An initial factor which is likely to influences the appropriate choice of an agent is whether the agent is going to be making new decisions (DPAHC) or whether the agent is going to be primarily empowered to see to it the principalís decisions are followed (combined living will with agent document).

First, unless specific guidance provisions are to be included, the principal must expect the final decisions made will tend to reflect the agent's own biases, prejudices, and psychological agendas even more than the principalís. Therefore, an appropriate agent in these circumstances should share the principal's basic approaches to quality of life issues.

Second, because incapacitated persons are likely to be emotional and financial burdens on their family, potential agents may experience a conflict of interests. Unless the principal's goal is to reduce such burdens on others, choice of a person who would not bear direct financial burdens may be more appropriate.

Third, making life and death decisions for another person is psychologically stressful. As a result, agents may subconsciously try to avoid the moral and psychological responsibility for forsaking care. As they are only given the power, but not the duty, to act, the result may be prolonged, agonizing indecision. An appropriate agent should therefore be decisive and both willing and capable of accepting the emotional burdens which may ensue.

Fourth, principals should remember that other family members, especially those of a younger generation, are likely to underestimate the functional status or quality of life of the older individual. Those who have never suffered adversity are unlikely to understand the pleasures in living which still exist under physical limitations. A person whose enjoyment in life is largely physical or comes largely from activities which are not of interest to the principal may not be an appropriate agent.

Fifth, potential agents should always be asked if they would be willing to serve and would respect the principal's wishes. The desire of a spouse or adult child to decline to be designated as an agent because, "I can't be the one who pulls the plug," should be fully appreciated.

In contrast, when the agent is primarily responsible to see that the principalís directives are carried out, proximity to the place where care is to be undertaken is very important. In addition, the ability to communicate with health care providers is highly desirable. Also, the need to be forceful in seeing to it the principalís directives are being followed.

14.11 Determination of Competency/Capacity

AMD do not become operative as long as the patient is capable of decision-making. Therefore, before a clinician considers the directives in a living will or follows the directives of a health care agent, someone must determine the patient has lost decision-making capacity and to determine the capacity is not likely to return quickly. Although this frequently causes a major problem when trying to implement a traditional living will, it is less likely to cause problems when dealing with a terminally ill patient in whom improvement is not considered a likely possibility.

[Note this is not strictly true legally. In theory, the agent can direct care even if the patient is capable of decision-making, but, in fact, physicians will always follow the directives of the patient if there is a conflict assuming that the objection of the patient to the agentís decision essentially revokes the appointment of agency. In the absence of a terminal illness, this is more likely to be a problem during times of temporary loss of decision-making capacity if the agent chooses to direct the discontinuation of life-support systems.]

Fortunately, courts and the legal system have been moving away from the old concept of "competency," which requires a court determination and evolving toward a new concept of "capacity," which does not require court action. Instead, capacity is determined by the current ability of the individual to make and communicate specific decisions based on personal values and goals. As a result, physicians need not take a broad view of the patientís competency to make decisions in general, but can limit the determination of when an agent gains authority based on the patient's present understanding of his or her situation and the risks and benefits of a specific form of therapy being suggested. Appropriate criteria for the determination of capacity are whether the individual possesses sufficient mental function to understand in a reasonable manner the nature, extent, character, and effect of his or her illness and the proposed act or transaction which is contemplated. If the physician believes the patient is capable of making and communicating such a decision, the patientís current directives should be followed. If the patient is unable to make the decision, the directives in a living will or those made by the agent should be followed.

14.12 Other Concerns of the Physician

It is important to consider the concerns of physicians when drafting an AMD to try to anticipate and incorporate in the document information which will make it easier for the physician to honor the principalís directives. As with the question of capacity, these concerns are often simplified when dealing with an AMD written after the patient has developed a terminal illness.

The following are some of the medical concerns about living wills which should be considered:

1. Coercion. Physicians may worry the patient has written an AMD under pressure from family to do so, but this is unlikely to be a problem when the patient has been communicating with health care providers on a regular basis before the document is written. In fact, the most likely coercive force is the patientís own desire to preserve assets for the family, which may be a justified reason for trying to limit expenses for prolonging a life considered meaningless by the patient.

2. Informed consent. Physicians frequently question whether a patient who has written a general living will understood the significance of what they were writing at the time it was written. This is not likely to be a problem if the physician has taken part in the discussion prior to the writing of a living will for a terminally ill patient. [The major reason for including the notice provisions and article 1 in the living will form above.]

3. Conflict with family desires. A special concern for physicians arises when the family does not agree with the directives of a now incapacitated patient. The law would dictate that if the patient has left specific directives, the directives should be followed and not the familyís desires. The more specific the directive, the easier it is for the physician. The more ambiguous, the harder it is for the physician to follow the patientís wishes, especially if the family threatens a law suit if their wishes are not followed.

4. Inappropriate directives. Unfortunately, because most general living wills do not address the important disease states -- dementia, strokes, brain tumors and other derangements of the brain -- most living wills do not give clear directives when hard decisions about stopping care must be made. This is not likely to be a problem when dealing with patients with known terminal illness who have written living wills specifically addressing the issues of their predicted future care.

5. New therapies. Physicians may be more likely to try to keep a patient alive in the hope some new medical advance will reverse a previously untreatable disease than a directive would indicate. In the case of AIDS, for instance, this may in fact be quite rational, but there are few other conditions in which this would be reasonable.

6. Paternalism. Unfortunately, physicians may be reluctant to honor patient directives out of paternalism, a personal belief that the directive does not comply with the patientís best interest. Again, this is not as likely to be a problem when the patient has a known terminal illness and it has been discussed with the patient before the living will was written.

The following are some of the medical concerns about powers of attorney which should be considered:

1. Physicians worry that agents will be difficult to convince time must pass before a decision to stop therapy is appropriate. In the absence of agency, the physician normally decides when to discuss discontinuation of aggressive care with the patient or family. An agent appointed to make sure a patient's wishes are followed may feel impatient to honor the patient's expressed wishes that care not be unreasonably prolonged.

2. Physicians may fear the long-term effects of forcing the agent to make the final decision to forsake therapy for a loved one. As a family member the decision can be shared. As the agent, it is one person's to bear. This may lead either to an inability to make decisions or to guilt when a timely decision is made.

3. Physicians fear the legal power of an agent who may have personal reasons for directing the discontinuation of care.

4. Physicians fear that absent an obligation to make decisions, agents will waffle between the desire to follow the principal's wishes and the pressures of other family members and the potential for guilt. During such periods of non-action, treatment will be uncertain and will have to be continued against the wishes of the patient.

The best way around all of these problems is the inclusion of a comprehensive informational directive along with the naming of a health care agent.

14.13 Decisions of a Health Care Agent

Most principals executing a power of attorney for health care believe the agent they appoint is likely to make the same decision they would make in the same clinical situation. There is little evidence to support this belief. The kind of medical decisions which must be made when a patient is irreversibly incapacitated are likely to be determined as much by the agent's values and personal evaluation of quality of life as by the nature of the illness, and research indicates family members are generally unreliable in assessing a patient's quality of life. Although agents and principals are likely to evaluate the health issues similarly, significant discrepancies are likely to exist between their evaluation of the patient's emotional health, with spouses and children routinely underestimating a patient's satisfaction with life.

Similarly, studies continue to suggest agents and surrogates [decision-makers named by law in the absence of a designation by the principal] cannot predict patients' preferences for life-sustaining interventions. Agreement may be high when considering interventions for the patient's current health, but in the presence of dementia, or after a stroke, when the agent would have to make the decision for the patient, agreement is much less common. Indeed, in many studies selections made by appropriate agents are no closer to those which would be made by the principal than would be expected by random chance. [As reported by Emanuel and Emanuel, Proxy Decision-making for Incompetent Patients, 267:15 JAMA 2067-71 (1992). Also see discussion in Lieberson, Advance Medical Directives, (Clark/Boardman/Callaghan -- now part of the West Group of Legal Publishers, Rochester N.Y. 1992) ß20:5 and (Supp. 1997) ß21:14.]

Principals should therefore be advised that while their legal right of self-determination will be maintained by the naming of an agent, they should not expect this process to result in the same approach to medical care as they would have chosen for themselves.

14.14 Advantage of a Combined Document

Many commentators on advance directives, including groups like AARP, have concluded the main shortcomings of living wills would not exist if declarants took the time to write directives specifically addressing the various important clinical situations. If this were done, it would eliminate the supposed advantages of designated agents. At the same time, they believe if an appropriate agent is available, designating that agent to assure the declarant's wishes are followed is advisable. This general agreement has led to the introduction of combined documents, as are advocated in this book.

14.15 Form: Durable Power of Attorney for Health Care

The following is a suggested form durable power of attorney for health care. Like the living will form, it contains many provisions which are more instructive for the principal writing the document and for the physicians who will be asked to honor it than is required. There are also a number of provisions which should be considered for addition depending on the patientís specific circumstances.

The form does not contain provisions for signing and witnessing. As these vary from state to state and change frequently, the specific requirements of the state about witnesses, notaries, etc. should be checked and included in the document. As DPAHCs are purely statutory and not validated by the common law, it is much more important that they be signed and witnessed as direct by state statute than living wills.

DURABLE POWER OF ATTORNEY FOR HEALTH CARE

WARNING TO PERSON EXECUTING THIS DOCUMENT

THIS IS AN IMPORTANT LEGAL DOCUMENT. BEFORE EXECUTING THIS DOCUMENT, YOU SHOULD KNOW THESE IMPORTANT FACTS:

1. THIS DOCUMENT GIVES THE PERSON YOU DESIGNATE AS YOUR AGENT, THE "ATTORNEY IN FACT," THE POWER TO MAKE HEALTH CARE DECISIONS FOR YOU. YOUR AGENT MUST ACT CONSISTENTLY WITH YOUR DESIRES AS STATED IN THIS DOCUMENT OR OTHERWISE MADE KNOWN.

2. YOU SHOULD DISCUSS THIS DOCUMENT AND YOUR DESIRES WITH THE PERSON YOU WANT TO APPOINT TO BE YOUR HEALTH CARE AGENT. IT IS ALSO ADVISABLE TO DISCUSS THIS DOCUMENT WITH YOUR PHYSICIAN OR OTHER HEALTH CARE PROVIDERS BEFORE YOU SIGN IT TO MAKE SURE THAT YOU UNDERSTAND THE NATURE AND RANGE OF DECISIONS WHICH MAY BE MADE ON YOUR BEHALF. IF THERE ARE ANY LEGAL ISSUES IN THIS DOCUMENT THAT YOU DO NOT UNDERSTAND, YOU SHOULD ASK A LAWYER TO EXPLAIN IT TO YOU.

3. EXCEPT AS YOU OTHERWISE SPECIFY YOUR DESIRES HEREIN, THIS DOCUMENT GIVES YOUR AGENT AUTHORITY TO CONSENT, TO REFUSE TO CONSENT, OR TO WITHDRAW CONSENT TO ANY CARE, TREATMENT, SERVICE, OR PROCEDURE TO MAINTAIN, DIAGNOSE, OR TREAT A PHYSICAL OR MENTAL CONDITION, INCLUDING TREATMENT SPECIFICALLY UNDERTAKEN TO EXTEND YOUR LIFE. YOU MAY STATE IN THIS DOCUMENT ANY TYPES OF TREATMENT THAT YOU DO NOT WANT YOUR AGENT TO AUTHORIZE, SUCH AS VOLUNTARY INPATIENT MENTAL HEALTH SERVICES, CONVULSIVE TREATMENT, PSYCHOSURGERY, STERILIZATION, OR ABORTION. UNLESS YOU OTHERWISE SPECIFY IN THIS DOCUMENT, YOUR AGENT WILL ALSO BE GIVEN THE RIGHT TO EXAMINE YOUR MEDICAL RECORDS AND TO CONSENT TO THEIR DISCLOSURE AND, AFTER YOU DIE, TO (1) AUTHORIZE AN AUTOPSY, (2) DONATE YOUR BODY OR PARTS THEREOF FOR TRANSPLANT, THERAPEUTIC, EDUCATIONAL, OR SCIENTIFIC PURPOSES, AND (3) DIRECT THE DISPOSITION OF YOUR REMAINS.

4. NOTWITHSTANDING THIS DOCUMENT, YOU HAVE THE RIGHT TO MAKE MEDICAL AND OTHER HEALTH CARE DECISIONS FOR YOURSELF SO LONG AS YOU CAN GIVE INFORMED CONSENT WITH RESPECT TO THE PARTICULAR DECISION. IN ADDITION, NO TREATMENT MAY BE GIVEN TO YOU OVER YOUR OBJECTION AT THE TIME, AND HEALTH CARE NECESSARY TO KEEP YOU ALIVE MAY NOT BE STOPPED OR WITHHELD IF YOU OBJECT AT THE TIME.

5. YOU HAVE THE RIGHT TO REVOKE THE AUTHORITY OF YOUR AGENT BY NOTIFYING YOUR AGENT OR YOUR TREATING DOCTOR IN WRITING OR BY ORALLY NOTIFYING YOUR TREATING PHYSICIAN, WHO SHOULD THEN NOTE THE REVOCATION IN YOUR MEDICAL RECORD. SHOULD YOU REVOKE THE AUTHORITY OF YOUR ATTORNEY IN FACT, IT IS ADVISABLE TO DISTRIBUTE COPIES OF THE REVOCATION WHEREVER COPIES OF THIS DOCUMENT ARE LOCATED. IF YOU APPOINT YOUR SPOUSE AS ATTORNEY IN FACT, YOU MAY STATE THAT YOUR APPOINTMENT DISSOLVES ON DIVORCE. IN ADDITION, A COURT CAN TAKE AWAY THE POWER OF YOUR AGENT TO MAKE HEALTH CARE DECISIONS FOR YOU IF YOUR AGENT (1) AUTHORIZES ANYTHING THAT IS ILLEGAL, (2) ACTS CONTRARY TO YOUR KNOWN DESIRES, OR (3) WHERE YOUR DESIRES ARE NOT KNOWN, DOES ANYTHING THAT IS CLEARLY CONTRARY TO YOUR BEST INTERESTS.

6. THIS DOCUMENT PERMITS, BUT DOES NOT IMPOSE A DUTY ON YOUR AGENT TO EXERCISE GRANTED POWERS. THIS MAY CAUSE PROBLEMS IF THE AGENT IS INDECISIVE.

7. YOUR AGENT MAY NEED THIS DOCUMENT IMMEDIATELY IN CASE OF AN EMERGENCY THAT REQUIRES A DECISION CONCERNING YOUR HEALTH CARE. COPIES SHOULD BE GIVEN TO YOUR ATTORNEY IN FACT AND YOUR PRIMARY CARE PHYSICIAN. YOU SHOULD INDICATE ON THE DOCUMENT ITSELF THE PEOPLE AND INSTITUTIONS WHO WILL HAVE SIGNED COPIES.

8. MOST STATES DO NOT ALLOW THIS DOCUMENT TO BE CHANGED OR MODIFIED. IF YOU WANT TO MAKE CHANGES YOU MUST EXECUTE AN ENTIRE NEW DOCUMENT.

9. DIFFERENT STATES HAVE DIFFERENT REQUIREMENTS FOR SIGNING AND WITNESSING THIS DOCUMENT. IF YOU HAVE BEEN IN AN INSTITUTION RECENTLY, YOU SHOULD HAVE BEEN GIVEN INFORMATION ABOUT HOW IT SHOULD BE SIGNED ON ADMISSION.

 

General Statement

As of this date, (Month and Day), (Year), I, _______________ ________________ (Name) have been diagnosed by my physician, ______________________ (Name of Physician), of _________________

_____________________ (Address) as having the following disease or condition which I understand to be chronic, progressive, and irreversible, even though progression may not be observable from day-to-day: _____________________________________

(Name of Disease or Condition).

I, (Name), being of sound mind, voluntarily execute this document with the intent of creating a durable power of attorney for health care. Nevertheless, I expect to be fully informed about and allowed to participate in any health care decision for myself to the extent I am able.

After careful consideration, thought and discussion, I have chosen my attorney in fact (hereinafter referred to as my "Agent") to make health care decisions on my behalf based on his or her understanding of my concerns, directives, values and goals. No competing interests of other family members or third parties shall interfere with or compromise his or her decisions. If asked to make decisions covering areas we have not discussed, I will rely on and vest decision-making solely with him or her rather than in some other party or group of parties in order to minimize confusion and simplify decision-making.

In exercising this authority, my Agent shall attempt to reach the decision I would have made under the circumstances, based [first on any instructional directive(s) I have left and second] on his or her understanding of my preferences and values. If my Agent determines he or she does not have enough information to reach the decision I would have made under the circumstances, my Agent shall make a decision based on what he or she believes to be in my best interests. In either event, my Agent has discretion to choose among a wide range of reasonable choices[, including both traditional and experimental medical treatment or procedures] as he or she sees fit.

For the purpose of this document "health care decisions" mean consent, refusal of consent, or withdrawal of consent to any care, treatment, service, or procedure to maintain, diagnose, or treat an individual's physical or mental condition.

For the purpose of this document, I direct that wherever I have referred to "Life Support Systems" I intend to include not only mechanical or other artificial means to sustain, restore, or supplant a spontaneous vital function, but shall also include the following items:

A. transfusions, antibiotics, cardio-vascular regulators, cancer chemotherapeutics, anti-inflammatory medication or any other drugs administered to control a disease process;

B. nutrition and/or hydration given intravenously, by nasogastric or gastrostomy tube or any other means other than voluntarily taken by mouth;

C. cardio-pulmonary resuscitation;

D. surgery; and

E. invasive or investigational procedures, including intubation and needle punctures.

[Note: Any of the provisions A through E can be removed if desired.]

I specifically request if I or my Agent direct that I not be given nutrition and hydration, this shall be interpreted to include both oral and artificial food and fluids.

I specifically authorize my Agent, after obtaining appropriate information from my physicians and after making reasonable efforts to communicate with me, to demand that life support systems be forsaken or discontinued if doing so is consistent with my directives in a valid living will or as otherwise known by my agent to be my updated wishes.

I recognize this authorization may exceed the powers granted under a statutory durable power of attorney or a durable power of attorney for health care in the state in which I am being treated. If such is the case, I direct this authorization be honored as an exercise of my rights to exercise self-determination in health care under the United States Constitution, the Constitution and the common law both of the state of my domicile and state in which I am receiving care, and any other federal or state laws, rules, regulations and decisions, judicial or administrative.

I request this document be assumed to be valid unless my health care agent herein named or my attending physician can verify I have revoked this document orally or in writing.

1. Appointment

I, (NAME OF PRINCIPAL), with present address of (Address), do hereby appoint [(NAME OF AGENT)]/[my (relationship), (NAME OF RELATIVE or FRIEND),] with present address of (Address) [and telephone number (number)] my true and lawful Attorney in Fact for Health Care, hereinafter referred to as my "Attorney in Fact" or "Agent," to make health care decisions on my behalf. If my said Attorney in Fact ceases to serve, then I appoint (my relationship, if any),(NAME OF SUCCESSOR ATTORNEY IN FACT) of (Address) [and telephone number (number)], my true and lawful Attorney in Fact.

THIS POWER OF ATTORNEY SHALL NOT BE AFFECTED BY MY SUBSEQUENT DISABILITY OR INCAPACITY

[Note: Some state statutes provide specific language which only grants decision-making power to the Agent after the Principal becomes incompetent or incapacitated. This may be beneficial, but may require court intervention.]

2. Powers Regarding My Personal Care

The scope of authority granted in this durable power of attorney for health care is limited to matters set forth herein, but includes powers reasonably necessary to carry out the intent of this instrument. With respect to my personal care, my Agent shall have the power:

(a) To request, review, and receive any information, verbal or written, regarding my physical or mental health, including medical and hospital records, and to execute any releases or other documents which may be required in order to obtain this information.

(b) To employ and discharge physicians, psychiatrists, dentists, nurses, therapists and other professionals as my Agent may deem necessary for my physical, mental, and emotional well-being, and to pay them or any of them reasonable compensation.

(c) To give or withhold consent to my medical care, surgery, or any other medical procedures or tests; to arrange for my hospitalization, convalescent care, or home care; and to revoke, withdraw, modify, or change consent to my medical care, surgery, or any other medical procedures or tests, hospitalization, convalescent care, or home care that I or my Attorney in Fact, as my Agent, may previously have allowed or consent to which may have been implied due to emergency conditions. I ask my Agent to be guided in making such decisions by what I have told my Agent about my personal preferences regarding such care. Based on those same preferences, my Agent also may summon paramedics or other emergency medical personnel and seek emergency treatment for me, or choose not to do so, as my Agent deems appropriate given my wishes and my medical status at the time of the decision. My Agent is authorized, when dealing with hospitals and physicians, to sign documents titled or purporting to be a "Refusal to Permit Treatment" and "Leaving Hospital Against Medical Advice" as well as any necessary waivers of, or releases from, liability required by the hospitals or physicians to implement my wishes regarding medical treatment or non-treatment.

(d) To consent to and arrange for the administration of pain-relieving drugs of any type, or other surgical or medical procedures calculated to relieve my pain even though their use may lead to permanent physical damage, addiction, or even hasten the moment of (but not intentionally cause) my death. My Agent may also consent to and arrange for unconventional pain-relief therapies such as biofeedback, guided imagery, relaxation therapy, acupuncture, skin stimulation or cutaneous stimulation, and other therapies I or my Agent believes may be helpful to me.

(e) To exercise my right of privacy to make decision regarding my medical treatment and my right to be left alone even though the exercise of my right might hasten death or be against conventional medical advice. My Agent may take appropriate legal action, if necessary in the judgment of my Agent, to enforce my right in this regard.

(f) To insure any legal requirement I receive comfort care under any statute shall be limited to pain medication and such other therapy or procedure which clearly is required for my observable personal comfort, not the comfort of those around me.

(g) To insist nothing in this document should be interpreted to preclude my physicians from undertaking medical or surgical treatment primarily intended for the relief of my pain or discomfort, even if such treatment runs a significant risk of hastening the specific time to my death.

(h) If I am cared for at home, to arrange for such home care and pay all said costs, without incurring personal financial liability, including the expenses of round-the-clock nurses or the equivalent, the rental or purchase of hospital type furniture, medical equipment and supplies (including special beds, wheelchairs, tables, bathroom fixtures, elevators, stair glides and ramps) as well as the temporary or permanent installation of such equipment in any home or homes owned or rented by me, my spouse or both of us, including necessary structural alterations.

3. Third Party Reliance

No person who acts in reliance upon any representation made by my Agent as to the scope of authority granted under the document shall incur any liability to me, my estate, my heirs, successors or assigns for permitting my Agent to exercise any such power, nor shall any person who deals with my Agent be responsible to determine or insure the proper applications of funds or property.

4. Determination of Incapacity

(a) For purposes of this document, "incapacity" exists if my attending physician signs a certification in my medical records which specifically expresses the opinion that I have a condition which makes me unable to receive and evaluate information effectively or to communicate decisions to such an extent that I lack the capacity to manage my health care decisions.

5. Revocation

This durable power of attorney for health care may be voluntarily revoked only by me at any time by (i) my written revocation delivered to my Agent; (ii) my written revocation delivered to my attending physician; or (iii) my oral declaration of revision given to my attending physician and recorded by him or her on my medical records.

6. Effect if Attorney in Fact Unavailable or Unwilling to Act

If no Agent designated herein is available or willing to act as directed, I request my health care providers to consider the information about my desires expressed herein to carry the same force and effect as any other written advance medical directive maintaining the declarant's right of self-determination in health care.

7. Nomination of Guardian, Conservator of Person, Etc.

If a Guardian, Conservator of the Person, or similar fiduciary is to be appointed for me, I nominate the following individual to so serve:

_____________________________________________________

Insert name and address of person nominated as Guardian/Conservator of the Person.

8. Informational Provisions:

The following informational provisions are included for the benefit of my Agent with the understanding my care will be directed accordingly.

[Note, most of the general provisions in the living will form document above are also appropriate for inclusion as information provisions in the DPAHC. The following may also be considered for inclusion as informational provisions:]

1. I direct that if at all possible, I would like to live the rest of my life and to die at home. If this is not possible and hospitalization is required or if I must be treated in a nursing home, I request that no additional therapy be undertaken except to relieve my pain or suffering.

2. I direct that if at all possible, I would like to live the rest of my life and to die at home. If this is not possible and institutionalization is required, I would prefer being treated at a hospice facility.

3. I would not want any health care provider to worry about being sued for following my directives. I therefore hereby bind myself, my heirs and my agent herein named to indemnify all participants in the making of this directive or in honoring its directives, whether it be a health care provider, my spouse, a relative, friend or any other person, including a member of an emergency response team, against any responsibility in any form, legally, professionally or socially, for complying with my expressed wishes.

4. I direct my agent to specifically ignore the desires of (Name) in reaching any decisions as he or she does not share my wishes about how I should be treated when I am no longer able to make decisions for myself.

5. If under the terms of these directives it would be appropriate to withhold life support systems, I request a letter to this effect be left at my bedside by the attending physician with a copy of this living will to inform any medical emergency personnel of the situation and to assure them all the immunity possible under the laws of the jurisdiction for following my directives in good faith.

6. I request the holder of this declaration or the holder of any copy of this declaration carry the moral obligation to give such document to any physician in charge of my care who is not aware of its existence.

7. I hereby make known a general desire to be allowed to die at home. Please honor any future request to be discharged from a facility at a time I am dying even if my decision-making capacity is limited as long as my family is willing to provide required comfort care.

8. I do not want to be physically restrained even if this may result in some risk of falling or otherwise being injured. Under these circumstance, those tending to me shall not be held responsible for any ill effects which may result.

A patient with AIDS might consider the following provisions:

9. If my attending physician, after obtaining appropriate consultation, concludes I am unlikely to ever leave the hospital, I request all life-support systems be discontinued and care be limited to providing for my comfort.

10. If I am receiving hospice care and a new method of therapy is made available which holds the promise of reversing my mental incapacity, I request it be given to me within the hospice if possible. If not possible, please have me moved to an alternative facility where I may receive the new therapy.

A patient who is considering the authorization of the use of terminal sedation should consider the inclusion of the following provisions:

1. I do not want to end my life in pain or with severe suffering. I have discussed this with my family and my health care providers and expressed acceptance of the concept of terminal sedation if required. I therefore direct that if the time comes when my health care provider(s) believe the only way to control my pain and suffering is to keep me asleep with medications, I direct it be done.

2. If a decision is made in the course of my therapy that the only way to effectively treat my pain and/or suffering is to keep me asleep with medications, I direct that after this is undertaken and I have subsequently lost the capacity to make medical decisions, no relative, agent, health care provider, or other individual shall make or enforce a surrogateís decision to stop this therapy.

A patient who is considering voluntary terminal dehydration should consider the inclusion the following provisions:

3. If I have made a decision to voluntarily stop taking oral nutrition and hydration as a means of controlling my life expectancy, and have acted in accordance with that decision, I direct no effort be made to force oral nutrition and hydration or any form of artificial nutrition and hydration, including intravenous fluids or any form of tube feeding.

4. I direct if food and water are left at the bedside and I do not voluntarily attempt to swallow them at a time I am capable of doing so, that this action should be taken as a decision on my part to voluntarily refuse nutrition and hydration.

5. If I have voluntarily refused nutrition and hydration, at no time should I be given small quantities of food or fluids beyond that required to care for my mouth locally. No action on my part shall be viewed as indicating thirst or hunger other than a request on my part for food or fluids.

6. If as a result of my refusal of oral nutrition and hydration I lose my capacity to make medical decisions, I direct my rejection of food and fluids be honored by my family, friends, health care providers and agents, if any.

7. I specifically affirm my belief in the good advise of my physician, (Name). I therefore request my agent to consult with, (Name) M.D., presently of (Address) with telephone number (telephone number) prior to making a decision to forsake life support systems if possible.

8. [I know that I am pregnant]/[I believe I might be pregnant]. Even if this is so, I still want life support systems to be withheld or withdrawn unless a medical evaluation determines the fetus is viable and could, with a reasonable degree of medical certainty, develop to live birth with continued application of such life support systems.

14.16 Do-Not-Resuscitate Orders: In General

Do-Not-Resuscitate (DNR) orders are medical orders left on the patient's chart by an attending physician which instruct other health care providers not to use or order specific methods of therapy, collectively referred to as "cardio-pulmonary resuscitation," or "CPR," on the particular patient.

CPR includes those emergency medical treatments employed when a patient experiences sudden loss of oxygen supply to the brain, either because of inadequate oxygen uptake from the lungs or inadequate blood flow required to carry oxygen from the lungs through the heart to the brain. The need for CPR always arises in an emergency situation because loss of oxygen supply to the brain quickly results in death. To the contrary, not all emergencies are referred to as CPR. Only those which relate to the lungs, heart and circulation are referred to as "cardio-pulmonary arrest" triggering the need for CPR.

Common methods employed as part of CPR to restore oxygen supply to the lungs include 1) artificial respiration, either by breathing into the patient's mouth, forcing air into the lungs with a simple balloon type device, or physically expanding the chest to produce a vacuum and draw in air; 2) placing a tube in the trachea to supply oxygen to the lungs (intubation); 3) use of mechanical respirators [also referred to as "ventilators"]; 4) removal of foreign material from the bronchi (airways leading to the lungs), a condition referred to as "aspiration"; 5) use of air mixtures with increased oxygen content; 6) placing an opening directly into the trachea (tracheostomy); 7) forcibly expelling a foreign body from the larynx (the Heimlich maneuver) and 8) supplying oxygen under increased pressure directly to the lungs )"positive pressure breathing").

Common methods employed to support a failing heart and circulation include 1) shocking the heart to stop abnormal rhythms (defibrillation); 2) pumping on the heart; 3) using an internal or external pacemaker to induce a regular heart beat; 4) use of medications to stimulate the heart to pump or pump harder; 5) use of a mechanical pump to drive the circulation; 6) use of chemicals to reverse acidity of the blood; 7) use of drugs which increase blood pressure; and 8) mechanically pumping the heart with a hand.

CPR is time-consuming, expensive, highly intrusive, and of highly limited success, but can produce many years of meaningful life in selected patients. Because it always arises in an emergency, the decision to employ CPR should be made in advance. In the absence of a DNR order, CPR is automatically undertaken. In most hospitalized patients CPR is appropriate, but in many, including most patients suffering from terminal illness, it is not. Situations in which CPR is not warranted require a DNR order, or CPR will automatically be started.

Although AMD which are intended to forsake all care other than that used to comfort the patient should include a DNR order, the reverse is not necessarily true. In many situations in which improvement is still possible, it would be appropriate to continue aggressive care of the underlying disease yet the patient and/or the family might consider the possible benefit of further care to be so remote that if a "natural death" were to occur, they would not want the medical team to attempt a resuscitation. This is particularly true when the cardio-pulmonary arrest itself is likely to make the underlying condition much worse.

14.17 Do-Not-Resuscitate Orders/Difficulties

Do-not-resuscitate orders are a special kind of AMD. Instead of telling doctors when the patient wants to forsake further medical care to keep them alive, the DNR order tells the doctor that if the patient experiences a natural death through stoppage of the heart or lungs, the patient doesnít want the doctor to attempt to return him or her to life.

Unfortunately, making this decision is much more complicated than it seems for many reasons.

First, we often think of attempts to resuscitate a dying patient as being very complicated medical procedures which are highly invasive of the patient and undignified at a time when a peaceful passing is desired, but this is not necessarily the case. While resuscitation may relate to half an hour of invasive tubes, pushing, prodding and broken ribs, to the contrary, on many occasions it only requires removing a piece of food from the patientís throat or giving the patient one electrical shock through a paddle placed on the chest for a total of fifteen seconds.

Second, because the public thinks resuscitation is highly successful, there is a strong tendency to decide to go ahead and attempt to resuscitate a patient when in fact only a vary small percentage of patients in whom resuscitation is attempted every live to leave the hospital.

Third, cardio-pulmonary resuscitation was originally developed with the idea it would only be undertaken in those clinical situations in which the physicians thought there was a reasonable chance the patient would respond and get better. It was the evolution of the law which now forces physicians to undertake resuscitation efforts in the absence of a written DNR order even when they feel it is inappropriate or futile.

Fourth, because physicians seldom talk to patients about their desire to be resuscitated or not, the decision most often has to be made by a family member, not the patient himself or herself.

Fifth, because the law in Connecticut, for instance, requires a surrogate decision-maker to make decisions based on the known wishes of the patient and most patients havenít discussed their desires regarding resuscitation, it is hard for relatives to direct resuscitation not be attempted.

14.18 Do-Not-Resuscitate Orders/Principles Guiding Decision-Making

In spite of these problems, there are some general principles which may be helpful in dealing with do-not-resuscitate orders in the terminally ill.

First, it is much better when the decision to forego possible resuscitation is made by the patient than when it has to be made by a family member. Although physicians may be reluctant to ask the patient out of fear the patient will take it as a sign of hopelessness, family members may be in a position to introduce the question as a show of concern for the patientís interest without producing such fear, for they are not seen by the patient as an ultimate source of knowledge. Once the patientís position is known, it can then be passed on to the physician to arrange for an appropriate order to be written after he or she checks with the patient to be sure the decision was correctly communicated.

Second, in terminally ill patients who have reached a point in their disease where life is no longer enjoyable, there is little reason to attempt a resuscitation absent hope for better days ahead.

Third, in making a decision to have a patient undergo resuscitation it is well to begin with an understanding of the rule of thirds. Of patients dying in a hospital, in a little over one third, resuscitation is attempted; in approximately one-third of those in whom it is attempted, it will be successful and of these, approximately one third will go home. This means that among all patients who experience cardio-pulmonary arrest, about 3% end up going home as a result of attempted resuscitation. Most patients who are terminally ill are among the two-thirds in whom resuscitation is not attempted. And when it is attempted, their chance of going home is significantly less than the average patient -- almost certainly, less than one percent.

Fourth, the above statistics relate to patients in the hospital where medical specialists and equipment is readily available. The success in nursing homes, at home, or in the community is far lower than in the hospital -- essentially nil.

Putting this information together, it is reasonable to say that early in the course of a terminal illness, the question of whether a do-not-resuscitate order should be written is best determined by the physician directly with the patient because it depends on how long the patient has to live, how much discomfort is faced, how much meaning life still has in store for him or her, and how likely resuscitation would be successful without destroying any remaining quality of life. At this point in time, it is very difficult for a surrogate to balance the pros and cons and it is ethically wrong for that decision to be made by anyone other than the patient if the patient is able to make it himself or herself.

In contrast, when the terminally ill patientís underlying disease has progressed to the point where it has robbed the patient of decision-making ability, it is almost always appropriate to forego cardio-pulmonary resuscitation.

14.19 Do-Not-Resuscitate/Hospital Forms

The execution of a DNR order is almost always initiated by the attending physician, frequently as part of protocols or guidelines developed by the individual health care facility. Such protocols or guidelines vary greatly between facilities, in large part because there is an ongoing battle between those administrative forces which want complete documentation of patient wishes and clinical providers, who realize an emergency team called to undertake resuscitation do not have time to read through a long form document. The clinicians tend to prefer a form similar to that provided by Michigan state statutes for out-of-hospital DNR Orders illustrated below. The following form reproduced with the permission of the Milford Hospital, Milford, Connecticut, is typical of a standard form used in a hospital setting at a time when completeness is being stressed.

DO-NOT-RESUSCITATE ORDER FORM

"1. Is the patient capable of understanding the nature and consequences of health care decisions? Yes___ No___

Does an Advance Directive exist? Yes___No___

Is the patient in a terminal condition? Yes___ No___

Is the patient permanently unconscious? Yes___ No___

Comments:_______________________________________________

"2. If the patient is capable, a discussion should be held and documented in items 4 and 6, and orders should be placed in item 5 that are consistent with the Advance Directive.

"3a. If the patient is incapacitated and there is a reliable Advance Directive in the medical record, check here ___, and enter orders in item 5 that are consistent with the Advance Directive.

"3b. If the patient is incapacitated and there is no Advance Directive in the medical record, or the Advance Directive needs clarification, check here ___, and contact the Conservator of the Person/Health Care Agent/Next of Kin/or other appropriate person regarding prior written or oral expression of the patient's wishes. Document the discussion in items 4 and 6, and place orders in item 5 that are consistent with the discussion. If the wishes of the patient are unknown, proceed to item 3c.

"3c. If the patient is incapacitated and has never expressed any written or oral wishes, check here ____. A discussion regarding limitation of treatment decision should be held with a substitute decision-maker. Consent for limitation of treatment may be given by one of the following in order of priority: (Circle one): Conservator of the Person; Spouse; Adult Child(ren); Parent(s); Adult Sibling(s); Grandparent(s); Other (Specify) _____________. Proceed to items 4,5,6.

"4. On _____________(date), a discussion was held between ______

________________ (Attending MD) and _____________________ (Patient, Other -- specify relation to patient: ____________ ______________) regarding limitation of treatment for the patient.

"5. Order-specific measures/procedures to be performed or withheld/withdrawn per wishes of the patient or substitute decision-maker. (This section must be completed in entirety.) To change an order, please initial and date the change, and document your reasons.

 

Perform Withhold

Withdraw

Chest Compression _____ _____

Intubation _____ _____

Mechanical Ventilation _____ _____

DC Countershock _____ _____

Pressor Agents or Cardiac Stimulants _____ _____

Intravenous Antiarrhythmics _____ _____

Transfer to the Intensive Care Unit _____ _____

Major Surgery _____ _____

Invasive Line (A-line,

Swan-Ganz, Central line) _____ _____

Dialysis _____ _____

Transfusion of Blood Products _____ _____

Antibiotics _____ _____

Artificially-Provided Nutrition _____ _____

Artificially-Provided Hydration _____ _____

Other_________________ _____ _____

"6. Documentation of summary of discussion of: treatment options and risks and benefits of such options; that the patient's wishes have been considered; and that the decision is consistent with the physicians's best medical Judgment:

_________________________________________________________________

_________________________________________________________________

_________________________________________________________________

Signed: Date: Witnessed by:

14.20 Do-Not-Resuscitate Orders for Use at Home

DNR orders have their greatest use in terminally ill patients and because most terminally ill patients die in hospitals, we generally think of DNR orders in terms of hospitalized patients. But with the modern trend toward home care of terminally ill patients, there is a need for DNR order forms which match the needs of such patients being treated at home. In this setting, the most important issue deals with providing emergency "911" personnel with legally binding directives not to resuscitate the patient.

In general, because of the exceedingly low survival rate after attempted resuscitation of terminally ill patients at home, a decision against further hospitalization should lead to the execution of a bedside DNR order as developed within the particular state. As important is an understanding of all the people in the home that whatever happens, all calls for help should be directed through the office of the attending physician and not through calling 911.

As an example of a home DNR order, the following form is suggested by the Michigan statutes for home care use:

DO-NOT-RESUSCITATE ORDER

I have discussed my health status with my physician, _____________________. I request that in the event my heart and breathing should stop, no person shall attempt to resuscitate me.

This order is effective until it is revoked by me.

Being of sound mind, I voluntarily execute this order, and I understand its full import.

________________________________________ _______________

(Declarant's signature) (Date)

________________________________________

(Type or print declarant's full name)

________________________________________ _______________

(Signature of person who signed for (Date)

declarant, if applicable)

__________________________________________

(Type or print full name)

__________________________________________

Attorney-in-Fact for Health Care Decisions

Conservator of the Person/Guardian

Court Appointed Personal Representative

Next-of-Kin Relationship:_________________

________________________________________ ______________

(Physician's signature) (Date)

________________________________________

(Type or print physician's full name)

ATTESTATION OF WITNESSES

The principal (or surrogate) who has executed this order appears to be of sound mind, and under no duress, fraud, or undue influence. Upon executing this order, the principal has (has not) received an identification bracelet.

____________________________ ______________________________

(Witness signature) (Date) (Witness signature) (Date)

____________________________ ______________________________

(Type or print witness's name) (Type or print witness's name)

14.21 Do-Not-Resuscitate Orders/Special Considerations

One area of special concern regarding DNR orders in terminally ill patients relates to the standard practice in hospitals of routinely cancelling DNR orders when the patient is taken for surgery or for special diagnostic or therapeutic procedures.

In a way it is understandable. During surgery and during certain procedures such as colonoscopy or invasive radiologic procedures there is an increased risk of the patient undergoing a cardio-pulmonary arrest and dying. The doctors undertaking these procedures are likely not to know the patient well and do not want to feel responsible for the patientís death. They also feel if they must honor a do-not-resuscitate order, they may undertreat the patient and are likely to point out that because they will be there tending to the patient at the exact time the arrest occurs, it is very likely resuscitation will be easy and successful.

This makes sense in many cases, but it doesnít make sense when the terminally ill patient is suffering, has no hope of getting better, and is undergoing surgery or another medical procedure purely for relief of pain. Under these circumstances, the patientís desire not to be resuscitated if death occurs should be honored.

To achieve this goal, some hospitals have initiated procedures whereby the surgeon or special medical operator must ask a patient who has a DNR order whether it should be continued during the procedure, but many hospitals do not and the order is automatically cancelled. If the patient and/or family has clearly made a decision they donít want resuscitation undertaken under any circumstances, this desire should be made known when any special procedure is being considered.

The following is a form that can be used to insure resuscitation is not attempted:

Special Consent Form for Use in Operating Room

Special Consent Form: Operative Do Not Resuscitate

Clarification {1}

Hospital Heading

[I]/[We] understand that the above named patient has been designated as DO NOT RESUSCITATE (DNR) by a physician order.

This patient is going to surgery for the following procedure:

_________________________________________________________________

_________________________________________________________________

______ This patient desires that the DNR order in place be followed in the Operating Room and Post-Anesthesia Care Unit. The patient understands that clinical events believed to be temporary and reversible will be treated and standard anesthesia procedures will be employed.

______ The patient desires that full resuscitative measures be employed in the Operative Room and Post-Anesthesia Unit in all clinical situations.

Date:

Time:

Signature:

Signature of Responsible Party:

14.22 Anatomical Gifts: In General

In the past, organ and tissue transplantation has largely been undertaken using donors who have died from acute causes of brain death, like automobile accidents, shootings, or hemorrhage within the skull. In the future, however, especially with the use of newer techniques to preserve organs and with a tendency toward using ever older donors, donations by terminally ill patients are likely to become an increasingly important source of transplantable body organs.

Although patients dying of cancer, AIDS or other infections are likely not to become potential donors, patients dying after strokes, heart problems, and Alzheimerís disease may become potential candidates in the future even when death is associated with heart stoppage and not brain death.

With this in mind, it is important to find out how a terminally ill patient thinks about giving a "gift of life," by permitting use of his or her organs by another after death.

14.23 Anatomical Gifts; Surrogate Decision-Making

Both dying patients and potential recipientís of human transplants are repeatedly hurt by surrogate decision-making. There is strong evidence many more people would agree to be an anatomical donor themselves than would be willing to make that decision for someone else, which means failure to ask a dying patient about anatomical gifting markedly decreases the availability of donor organs. In addition, because families frequently refuse to honor the wishes of a deceased person for their own convenience thinking the deceased person "will never know," they deprive the spirit of the deceased the right to do a terminal good at the end of life.

And, unfortunately, although the Uniform Anatomical Gift Act of each state directs the wishes of the deceased should control even if there are family objections, the fear of law suits leads most physicianís to honor the familyís wishes even when all legal and ethical positions support the right of the patientís autonomy in anatomical gifting.

14.24 Anatomical Gifts: Form

The following form is recommended for use by the Uniform Anatomical Gift Act of 1987, which is now being followed in most states:

ANATOMICAL GIFT BY A LIVING DONOR

Uniform Anatomical Gift Act (1987)

Pursuant to the Anatomical Gift Act, upon my death, I hereby give (check boxes applicable):

1. [ ] Any needed organs, tissues, or parts;

2. [ ] The following organs, tissues, or parts only ____

_______________________________________________________

3. [ ] For the following purposes only

_______________________________________________________

(transplant-therapy-research-education

_____________________ ____________________________

Date of Birth Signature of Donor

_____________________ ____________________________

Date Signed Address of Donor

INSTRUCTIONS

Check box 1 if the gift is unrestricted, i.e., of any organ, tissue, or part for any purpose specified in the Act; do not check box 2 or box 3. If the gift is restricted to specific organ(s), tissue(s), or part(s) only, e.g., heart, corneas, etc., check box 2 and write in the organ or tissue to be given. If the gift is restricted to one or more of the purposes listed, e.g., transplant, therapy, etc., check box 3 and write in the purpose for which the gift is made.

...............................

For those who do not wish to donate:

Pursuant to the Anatomical Gift Act, I hereby refuse to make any anatomical gift.

_____________________ ____________________________

Date of Birth Signature of Declarant

_____________________ ____________________________

Date of Signing Address of Declarant

.............................

For attachment to a driver's license:

___________________________________

Print or Type Name of Donor

Pursuant to the Anatomical Gift Act, upon my

death, I hereby give (check boxes applicable):

1. [ ] Any needed organs, tissues, or parts:

2. [ ] The following organs, tissues, or parts only _____

__________________________________________________

3. [ ] For the following purposes only:

_______________________________________________________

(transplant-therapy-research-education

Refusal:

4. [ ] I refuse to make any anatomical gift.

_______________________________

Signature

For anatomical gift by another:

Anatomical Gift by Next of Kin

or Guardian of the Person

Pursuant to the Uniform Anatomical Gift Act, I hereby make this anatomical gift from the body of __________________________ Name of Decedent

who died on _____________________ at ____________________________ Date Place

in _________________________________.

City and State

The marks in the appropriate squares and the words filled into the blanks below indicate my relationship to the decedent and my wishes respecting the gift.

I survive the decedent as [ ] spouse; [ ] adult son or daughter; [ ] parent; [ ] adult brother or sister; [ ] grandparent; [ ] guardian of the person.

I hereby give (check boxes applicable):

1. [ ] Any needed organs, tissues, or parts;

2. [ ] The following organs, tissues, or parts only ____

_______________________________________________________

3. [ ] For the following purposes only

___________________________________________________________________________ ________________________________

Date Signature of Survivor ______________________________

Address of Survivor

 


Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

Back to top

Website design and maintenance by Vermont.com