9.01 Family Issues/Family Suffering

A. Caregiver Burden

B. Family Showing of Compassion and Respect

C. Family Pressures and Dying at Home

D. Family Concerns Regarding Patient Suffering

E. Family Demands for Futile Therapy

F. Family Concerns in Stopping Aggressive Therapy

G. Family Requests for Assisted Suicide

9.02 The Signs of Dying

9.03 Physician Issues/Physician Suffering

A. Inadequate Training

B. Palliative Care as Non-Traditional Care

C. Death as a Failure

D. Recurrent Need to Deal with Death

E. Time Considerations

F. Specialization and Costs

G. Variability in Desired Treatment Philosophies

H. Dealing with Families in Conflict

I. Dealing with the Law

J. Miscommunications

K. Physicians Facing Their Own Mortality

9.04 Telling Patients the Truth

9.05 Desirability of Working with Patients, Not Surrogates

9.06 Balancing Symptom Relief and Sedation

9.07 Financial Issues

9.01 Family Issues/Family Suffering

A. Caregiver Burden

Caring for a terminally ill patient places heavy burdens on the family. According to the SUPPORT study, a huge survey of terminal care undertaken by a team of Harvard researchers in a number of upstate New York hospitals, 34 percent of terminally ill patients require large amounts of caregiving assistance from another family member, 20 percent require another family member to quit work in order to give care, 29 percent involve loss of family income, in 31 percent most of the family savings are spent, in 17 percent there is a forced major upheaval in family plans due to financial changes, and in 12 percent other members of the family become unable to function because of emotional effects.

In an article on the management of pain and symptoms in the dying patient [J Pain & Symptom Management, p. 295, 1991], Kathleen M. Foley, a well-known physician specializing in palliative care noted:

The dying process can become extremely long and arduous for all concerned. Limited patient resource, limited physician input, family financial concerns, family fatigue, and psychiatric disturbances in the family can all lead the patients to think that it would be better for everyone, if they were dead. These aspects of exhaustion and fatigue appear to be the crowning blow to the patient and family, who have previously coped relatively well but become overwhelmed by poorly controlled pain and the depletion of financial resources.

There are many considerations:

1. Planning the care of a terminally ill patient requires a financial evaluation of available resources and open discussion between family members and health providers. Unfortunately, finances may realistically limit potential approaches to care, especially as it relates to institutionalization.

2. The availability of family members willing and able to partake in care may determine whether it is practical to undertake the normally preferred home care and whether or not to request help from hospice, which usually requires the ready availability of personal aid.

3. When care is likely to take place over an extended period, vacations for primary caregivers becomes a necessity to prevent "burn-out." Recognition of this need is now so well established that hospice routinely provides for and is paid by Medicare for brief in-patient care of terminally ill patients in order to provide respite for home care providers.

4. Early recognition that certain family members are psychologically unable to take an active part in care or are limited in how much of the burden they can undertake is crucial to avoid distressing situations for the patient.

5. Caregivers must recognize each other,s psychological needs as well as those of the patient. Family, friends, and providers are all likely to be in the process of working through their own related suffering in their own ways.

6. Members of the caregiving team must strive to achieve an integrated approach to care to present to the patient, but must recognize that the overall plan will have to take into account difference in opinions regarding appropriate care among the team members.

7. Caregivers must have an opportunity to obtain a reasonable amount of rest so they do not become sleep deprived. This often requires a second person be available to care for the patient,s emergency needs through the night.

8. In many situations, caregivers must be willing and able to accept the unaccustomed need to evaluate pain and other symptoms and to determine when additional medication must be given.

9. Because caregiver fear often leads to undermedication of patients, these fears must be addressed and overcome by careful instructions from physicians. This is particularly true at the end-stage of disease when it is necessary to stress that no "harm" will come from over medication -- the worst potential effect being almost synonymous with the best -- death without further suffering.

10. If a caretaker is unable to make decisions knowing they could hasten death, they deserve to be replaced by professional aids.

Of necessity, concern for family suffering must be accepted by health care providers as part of medical care of the patient. If family members are distressed because the patient's symptoms are poorly controlled, greater intervention is required to obtain patient relief. If their distress is due to the physical requirements of caregiving, additional help in the home must be arranged. If distress is related to emotional aspects of caregiving, supportive psychotherapy should be considered. Through telephone calls, home visits, and occasional clinic visits, the health care team needs to monitor the well-being of the patient,s family as well as the patient and to take part in planning and arranging for relief of their symptoms. Conversely, it is the duty of the caregivers to make these needs known to other members of the team so alternative arrangements can be met without adding to the patient,s suffering.




B. Family Showing of Compassion and Respect

The showing of compassion repeatedly comes back to the issue of presence, the willingness to listen and the acknowledgement that what is happening to the patient is of critical importance to the family as well. The critical factor in presence is listening without minimizing the significance of what is happening to the patient, what is troubling the patient, what is important to the patient, and doing so in a non-judgmental way. Simply communicating with dying patients serves multiple purposes. It reaffirms their ongoing worth as living human beings, conveys compassion and care, and presents the opportunity to identify concerns and problems which can and should be addressed.

Family members should be given the opportunity to be present during the period prior to death. Visits from children reinforce the continuity of the personhood of the dying patient and are a potential source of significant consolation and pleasure. Many people are antagonistic to allowing young children to be around terminally ill patients, but most careful observers suggest that not allowing a child who wants to see a grandparent to do so because the grandparent is sick or dying is more harmful to the child than permitting the visit(s). This suggests the best rule is to ask the child what he or she wants to do. And, of course, the visits are likely to be very welcomed by the patient. [Note, most careful observers also believe it should be the child,s decision, not the parents, whether they view the body of a deceased relative.]

In many ways, the problem becomes harder when the patient is comatose, unresponsive, or delirious --situations in which the chance for any meaningful communication does not exist. Under these circumstances, many relatives and friends are likely to express a desire not to see the terminally ill patient in a state of distress, preferring to remember him or her for the rest of their lives in a more pleasant state. It is hard to advise how this situation should be resolved, as many people who choose not to see a loved one before death later resent that choice, while most tend to look back on it as the best for their own personalities.

Patients who have strong family ties generally cope much better with terminal illness than those who do not. One of the great accomplishments in life as viewed by a terminally ill patient is likely to be their role in producing a loving, caring family -- one "to be proud of." For patients who hold such patriarchal or matriarchal goals, it is important for the family to appear in harmony to the end. It is most unfortunate when the tribulations necessarily associated with the dying process is allowed to falsely undermine the patient,s perception of harmony within "the family," especially when in fact the evident disharmony arises out of each family member,s desire to do more.

The family needs to remember to be cheerful. Dying persons have no desire for depressed and doleful company. If caregivers, moods are going up and down, as they almost must during the periods of grieving which inevitably accompany the care of a dying loved one, excuses should be found for short term absences from direct patient care or contact. At the other extreme, inappropriate flippancy or frivolity that is insensitive to the mood and situation of the patient can increase a dying person,s feelings of isolation. Joking may be good distraction from the patient,s suffering, but should not be undertaken without considering how it will be interpreted by the patient.

Consistency and perseverance in fulfilling promises are important to relieve the dying patient,s fear of potential abandonment and isolation. Regular visits or telephone contact provide reassurance of continued support and concern. When they are interrupted, however, remember lapses will be much less threatening if explained beforehand to the patient, who is likely to be understanding and thus less threatened by the fear of abandonment. If absence cannot be anticipated, an honest explanation should be given, or an acceptable excuse made if the truth would upset the patient too deeply.

C. Family Pressures and Dying at Home

When asked, almost all patients express a preference to die at home once they are assured they will receive adequate pain management even when they are told home care means forsaking other advanced technical care. Those who prefer hospitalization usually do so not for the purpose of obtaining more sophisticated care, but out of a desire to avoid being a burden on the family.

For most, dying at home is seen as providing the best opportunity for quiet and privacy, dignity, and the family closeness that may make death easier for the patient and provide consolation for the bereaved. Assuming a stable and caring home environment exists, emotional and physical comfort is usually greatest in this setting with family and friends nearby. At times, however, it is not ideal.

When contemplating the best place for terminal care, the following issues should be considered:

1. Who are the present inhabitants of the home? Are they of an age and physical ability to meet the needs of the patient? Will the patient,s presence cause too much of a burden physically or emotionally on the occupants? Is there any impediment to home care through hospice, and would this meet the patient,s needs? Should care at home be considered an interim action with further placement in a nursing home anticipated or to be considered at a later date depending on the patient,s course?

2. Who would be in charge of decision-making at home? In other potential places? Would this be in fitting with the patient,s nature? Have there been successful and/or unsuccessful relationships between the patient and the would-be primary decision-maker in the past?

3. Are the facilities at home such that they can be adapted to meet the patient,s needs? Is there an appropriate room with available bathroom facilities? Would there be a place for others to come and visit? How difficult would this be? How expensive? Might a different room arrangement become more appropriate as the terminal illness progresses causing progressive weakness, etc.?

4. Do the people at home support the patient,s views as to what future medical care is advisable? Would being at home lead to a situation in which the caregivers are unwilling to follow the patient,s wishes?

5. Will being at home interfere with certain people visiting the patient? Would their loss of attention be felt negatively by the patient?

6. What special skills, equipment, or training will be required in the home or of people in the home? Will a hospital bed be required? Special mattresses to prevent bedsores? A bed-side commode? A wheelchair? A rolling bedside table? A television, stereo, computer hook-up etc.? A method of getting up and down stairs? Can they be arranged for and managed?

7. Are there special parameters which should be set before the patient is brought home? For example, certain potential future conditions which would require the patient to be moved to a nursing home? If so, should this be discussed beforehand to avoid the appearance of abandonment?

8. Does the potential primary caregiver at home have too many other responsibilities to undertake the primary care? If so, how important are these other responsibilities? Can they be suspended for awhile? Can other potential caregivers be relied on to help relieve either the old or the new responsibilities? Are they willing to do so?

9. Are there appropriate care givers to obtain and handle medications? Maintain body cleanliness? Maintain cleanliness and grooming of the hair? Clean laundry? Aid in ambulation, when possible. Change beds? Handle body wastes?

10. Can part of the weaknesses in home care be covered by professional employees? Are there funds to make this possible? Can they be arranged through hospice care or other home health-care agencies in the community?

D. Family Concerns Regarding Patient Suffering

The suffering of a terminally ill patient may be evaluated very differently by the family and health care provider. The patient may be calm when the physician appears after being restless all day by chance, due to medication schedules, or out of a desire to be a "good patient." The patient may choose to complain much more bitterly of pain or suffering to family than to physicians based on existential reasons not known to either the physician or family -- and maybe even the patient. In any of these situations, the family is in a position to pass this information on to the physician, who should take it seriously and not view it as initiated by a complaining caregiver(s).

At the same time, health care providers frequently fail to consider that families are likely to perceive a loved one,s actions as indicative of suffering when the physician, having greater experience, would not under the same circumstances. The physician is likely to walk out of a sick room in which the patient is lying eyes closed waking only to answer questions and think the level of sedation is perfect, while the family perceives the lack of ability to enjoy conversation to be a form of suffering. Tubes, I.V. lines, monitoring instrumentation, etc. are so routinely used in medical situations physicians may not even notice their presence, yet these various apparatuses are likely to be seen as major bodily intrusions by the patient,s family. Skin lesions such as sub-cutaneous bleeding are likely to be quickly dismissed by physicians, while families view them as serious complications of medical therapy. Under such circumstances, the patient,s family may not express their concerns, even though they should. At the same time, a thoughtful physician can so easily relieve the family,s distress with just a few well chosen words: "I think the level of sedation is just right," "I,m glad that feeding tube doesn,t seem to be bothering your mother," or "we frequently see that kind of bleeding under the skin in patient,s who are taking steroid medications. It does not mean there is a high risk of bleeding internally."

Differences between family and provider perceptions of suffering may also lead to significant problems related to the forsaking of non-comfort care, especially as it relates to artificial sustenance. If relatives perceive the level of patient suffering as significant, they are likely to find it difficult to accept forsaking of sustenance. In this situation, convincing the family the patient is not suffering or that any present suffering is only transient and can be relieved by pain medications, etc. may be an important part in maintaining harmony with and within the family.

E. Family Demands for Futile Therapy

Many factors, most of them related to "trust," seem to be combining to produce an increasing demand for futile therapy by families. In particular, the belief medicine is becoming too commercial is difficult for physicians to counter, for the basic premise is probably true, even though it is unusual for physicians to abandon therapy unless they truly believe it to be futile.

Another frequent factor which leads to demand of futile therapy is guilt. When family members feel guilty about past relationships with the dying patient or have reason to believe something they have done may have contributed to the death, they are likely to want to continue care to the very end. In such situations, it is important the family not be asked by the physician "what do you want me to do?" but to ask instead "what would your father want done?" Asked in this way, the person who feels guilty about not doing what the father wanted done in the past is likely to honor the patient,s wishes ahead of his or her own.

At least at the beginning, family demands for futile therapy should probably be honored by physicians. An attempt should be made to determine the basis of what appears to be unreasonable demands without specifically trying to change family opinion. Written documentation that therapy is being continued at the family,s direction based on certain family beliefs is desirable, along with a statement that the providers do not expect a positive outcome. When this is done, as long as the family has not lost trust in the providers and given time to observe that continued therapy fails to reverse the patient,s downhill course, the family will invariably recognize the presence of continued suffering without visible improvement and will come to a consensus in favor of forgoing non-comfort care. [Note: Legal decisions have repeatedly backed family demands for futile care even when the scientific evidence is overwhelming the care will not benefit the patient.]

Of course, comfort care is never futile and is always appropriate. Therefore physicians should not say "there is nothing more we can do for him or her," but should suggest instead that from here on care should be directed at maintaining comfort instead of prolonging life.

F. Family Concerns in Stopping Aggressive Therapy

The time of switching from aggressive care aimed at prolonging life to an approach aimed purely at providing comfort is an important point in the physician/family interaction. Ideally, it will have been discussed at least initially at some point prior to the time the decision is made, but it is still likely to be difficult for the family to accept. One issue which should be considered is the question of how to maintain at least some level of hope when everyone, including the patient, knows that care is no longer being aimed at prolonging survival. Another is how to explain to those caregivers who were not part of the decision-making team what is happening and why.

As part of the comfort-only approach, removal of unnecessary equipment which may impair the patient's appearance gains increased importance, along with removal of any undesired restrictions on visiting, the elimination of unnecessary procedures or investigations, and the determination and fulfillment of the needs of the family collectively and individually.

Another important consideration is removal of unnecessary drugs, often a welcomed event for family members who are concerned with the number of different medications the patient is receiving. Instead, emphasis is now focused on those drugs which are specifically meant to increase patient comfort, such as analgesics and sedatives. Of course, it is also a time to stop all diagnostic evaluations as well, unless they are undertaken relative to pain relief. This may also be a time to encourage the patient and family to communicate, touch and deal with "unfinished business," and to address issues involving the family unit as a whole.

G. Family Requests for Assisted Suicide

Families are unlikely to request a physician to assist the patient to commit suicide unless it has been brought up by the patient in private communications with the family. When a family member is acting as an intermediary for the patient, it is important to let the physician know it is the patient,s wishes which are being communicated and that they are allowing this to happen because they think the physician should know the patient,s thoughts, even though the patient is too embarrassed to raise the issue personally. By so doing, the family member permits any further discussion related to physician assisted suicide to occur directly between the patient and physician, the only appropriate relationship in which such a discussion should take place.

Another advantage of telling the physician even though the physician is prohibited from complying legally, is that the request is likely to be taken by the physician as a silent request for additional relief of pain or suffering.

9.02 The Signs of Dying

The final stage of the dying process can produce great anxiety among family members who do not know what to expect.

Weakness and diminished intake of food or fluids, either abrupt or gradual, are common manifestations of the patient entering the dying trajectory. These changes frequently seem to occur as part of an overall disengagement process in which the patient withdraws on a physical, emotional and social level. At this time, less communication takes place, but an awareness continues and, in fact, hearing may become more acute. There is often a focus on important objects in the person,s life: a person, a pet, a particular food. Overall, there is a tendency to lethargy, somnolence and a quiet resignation.

At some point, these more general signs give way to others which are more specific. L.H. Herbst, et al., suggested the following information about the symptoms of death developed by the San Diego Hospice Corporation be given families about what to expect in an article entitled: What Do Dying Patients Want and Need?, Patient Care magazine, Feb. 28, 1995. In the article, the authors also note great variability, any one patient potentially experiencing all or none of the anticipated symptoms.

1. The patient,s arms and legs may become cool to the touch, and the underside of the body may darken in color as peripheral circulation slows down. Arm blankets will help prevent the patient from becoming too cold.

2. The dying patient will gradually spend more and more time sleeping and at times may be difficult to arouse as metabolism decreases. The family should plan to spend more time with the patient during times when he or she is most alert.

3. The patient may become increasingly confused about time, place, and the identity of people nearby. Family members may need to remind the patient what day it is, what time it is, and who is in the room.

4. Urine and bowel incontinence is often not a problem until death is imminent. If needed, pads should be used to keep skin clean and dry.

5. Oral secretions may become more profuse and collect in the back of the throat. Most people are familiar with the term "death rattle," a result of a decrease in the body,s intake of fluids and inability to cough up normal saliva. Tilting the head to the side and elevating the head of the bed with pillows or obtaining an adjustable hospital bed will make breathing easier. Swabbing the mouth and lips with lemon-glycerine swabs also provides comfort.

6. Clarity of hearing and vision may decrease. The patient may want the lights on in the room as vision decreases. The family should be aware that hearing is often the last of the five senses to be lost, and they should not assume that an unresponsive patient cannot hear them.

7. The patient may become restless or have visions of people or things that do not exist. These symptoms may be a result of a decrease in the oxygen circulation to the brain and a change in the body,s metabolism. Talk calmly and assuringly with the confused person so as not to startle or frighten him further.

8. Patients will have decreased need for food and drink. Food supplements may be helpful in maintaining nutritional status, but it is unwise to push the patient to eat.

9. Breathing may become irregular, with periods of 10-30 seconds of no breathing. This symptom is very common and indicates a decrease in circulation and buildup of body waste products. Elevating the head of the bed sometimes relieves irregular breathing patterns. It is not a symptom that requires specific treatment.

10. If the patient has a catheter in place, the amount of urine will decrease as death approaches. Irrigation to prevent blockage may become necessary.


In addition:

Family members should be aware of the following signs of death:

* No breathing

* No heartbeat

* Loss of control of bowel or bladder

* No response to verbal commands or shaking

* Eyelids slightly open

* Eyes fixed on a certain spot

* Jaw relaxed and mouth slightly open

[Note: For an excellent discussion of what to expect during the terminal phases of illness see Marilyn Webb, The Good Death; The New American Search to Reshape the End of Life, Bantam, New York, 1997) pp. 238-243.]

The family should know whom to call when death occurs. If death is expected and a decision has been made to limit treatment to comfort care, the family should not call 911 or an emergency phone number. Instead, they should call their hospice or physician. A family member should write down the physician,s name and phone number, the patient,s full name, mother and father,s name, mother,s maiden name, Social Security number, and place and date of birth.

9.03 Physician Issues/Physician Suffering

For families to successfully deal with the needs of the dying patient they must interact successfully with the medical profession just as much as the reverse. This requires a certain level of compassion and understanding for health care providers just as providers are asked to consider the needs of the family. In a survey of 81 French general practitioners, 86% endorsed the assertion that encounters with death were a cause of physician suffering. The specific elements contributing to physician distress were reported to be the end of the doctor/patient relationship (58%), feelings of uselessness (55%) and failure (38%), increased awareness of their own mortality (49%), and the presence of "questions without answers." (31%) At the bedside of the dying patient, the most commonly reported feelings described by these physicians were sadness (94%) helplessness (89%), failure (61%), disappointment (59%), and loneliness (51%). Interestingly, physicians who specialize in palliative care of the dying patient find it much less stressful than those who only do so in patients they have failed to cure.

Physician problems are understandably aggravated in this country where, much more than elsewhere, the public has become so cynical about other people,s merits, be they politicians, attorneys, physicians, journalists, or clergymen. If the family enters the patient/physician relationship questioning the provider,s concerns for the patient, his or her financial value system, or commitment to the ethics of the profession, conflict is almost certain to ensue, to the detriment of the patient.

Consider the many following factors which can negatively influence the patient/physician relationship through the period of terminal care.

A. Inadequate Training

Many physicians are undertrained in care of the terminally ill. As a general rule "in teaching hospitals most patients are no longer seen by medical students or residents when the decision is made to treat them with comfort care. It is felt to be a waste of the trainee,s valuable time when they are OEnot going to do anything., OENot doing anything, translates into not undertaking traditional, disease-oriented medical treatments; but by implication it devalues the many complex medical options still available to help comfort the terminally ill. The clear message is given that caring for the dying has less importance than caring for those who will use medical technology to fight for life." [Quoting Quill, Death and Dignity, (W.W. Norton, New York, 1993) at p. 99]

As of 1993, only four percent of the nation,s medical schools has a separate course required on death and dying and only 26 percent of all medical residency programs offered instructions on end-of-life issues, although most programs offered some training as part of other programs.

Not only is training inadequate, the usual reference materials used by practicing physicians is also inadequate. The two most commonly referred to textbooks of medicine -- Cecil,s and Harrison,s -- are totally inadequate in the area. In the 1992 "Cecil,s," out of 2300 pages of text, only five discuss pain and three discuss the treatment of terminal illness. "Harrison,s" has even less coverage. The first modern textbook on palliative care, The Oxford Textbook of Palliative Medicine, wasn,t published until 1993, [Note: Updated by Oxford University Press, 1998] with the first guidelines on the treatment of pain in terminal illness being published for the first time in the late 1980s.

In most medical specialties when a physician finds himself or herself undertrained in a particular area, referral is made to an appropriate specialist. This is much more difficult when it comes to palliative care of a terminally ill patient, for there are so few specialists available and because doing so is likely to be considered a form of abandonment by the patient and physician alike.

Patients are likely to be unaware of this weakness in physician,s education, and physicians are likely to be more aware of the importance of an on-going relationship with the patient and family than they are aware of their own inadequate knowledge of the vast advancements which have been made in terminal care over the last ten years.



B. Palliative Care as Non-Traditional Care

For unexplained reasons, palliative care for terminal illness has largely developed outside of traditional medicine, only adding to the physician,s lack of knowledge. Although relief of suffering was a classic concern of traditional medicine back to the Oath of Hippocrates, the twentieth century has seen such emphasis on technologic developments in the prevention and cure of disease that palliative care has failed to receive its just consideration until the last decade. Instead, physicians who specialized in palliative care and most of the research on such care developed largely in the hospice system [discussed in a separate chapter below] independent of traditional medicine. As a result, much of the information which can be found in the literature on hospice care has not been fully incorporated into traditional care.

In fairness to doctors, it should be pointed out that acceptance of hospice care by the individual patient requires three very difficult sacrifices which make it particularly difficult for the average physician. First, it requires the patient to forgo any care which is aimed at cure or extension of life, thus limiting care to concerns related to comfort. Second, hospice essentially requires the patient to accept total care from hospice-based physicians, thus forcing a split in the ties with the former primary care physician. Third, because third-party payment to hospice requires a physician statement that the patient is anticipated to have less than six months to live, physicians are reluctant to make such referrals until the terminal nature of the disease process is evident to the patient. To most doctors trained with a belief that terminal patients at least deserve hope, such a declaration to enable acceptance to hospice care is distasteful, for it is seen as nullifying any chance of hope for the patient.

C. Death as a Failure

Physicians are trained to make all efforts to prolong life and the patient,s quality of life. People make fun of the fact physician,s tend to look on death as a failure, but I have personally made it known to others that, "when I,m sick, I want a physician who thinks of death as a failure." I recognize such doctors may want to avoid significant contact with dying patients, but I am willing to accept that in return for the best efforts to keep me alive and well as long as possible.

D. Recurrent Need to Deal with Death

By the nature of their occupations, physicians are forced to deal personally with many more dying "friends" than most other members of society. It,s surprising how often the physician becomes the terminal patient,s best friend during the last few weeks of life. Terminal patients often require multiple visits over a short period of time through this period, and physicians frequently become the patient,s confidant during this process. Patients with whom there has been little exchange of personal philosophy over years of intermittent care all of a sudden find the physician the one person with whom they can share their most intimate fears and concerns. The compassionate physician listens nonjudgmentally, but after awhile it becomes harder and harder.

When the physician,s own weariness becomes evident to the patient,s family, it may be appropriate to ask the physician how he or she is doing. The answer may be strictly medical and related to the patient, but don,t be surprised if the answer is more personal, such as feelings of sadness, compassion, loss, frustration, guilt, anger, anxiety, doubt, failure, depression, and helplessness. At times, if the dying process is being handled well with the maintenance of dignity, the physician may respond in a way reflecting an inner feeling of empathy, caring, closeness, love, joy, or hope, but such feelings may not be expressed for fear they will be misunderstood by the family.

[Note: The author well remembers the day he called a family to tell the parents their daughter, who had been injured in an automobile accident, had died after ten days in coma. I was crying so hard they offered to come over and console me. I went to the funeral, but soon thereafter stopped. I had gone to too many. And, to relieve my own guilt for non-attendance, I reasoned if I continued to go, I wouldn,t have enough empathy left to sit and talk with my next dying patient.]

E. Time Considerations

To most physicians, time appears to be an extremely precious entity, a problem presently aggravated by managed care with its emphasis on bottom line values. This at times may be a blessing, for physicians train themselves to be very efficient in the use of time. If problems are presented to them in an organized way, they can be handled very quickly, but this means pre-planning by the family and other providers. In order to make the best use of physician time, it is helpful to establish a priority of questions before the doctor appears. Determine who will ask the questions and distribute the answers to the other concerned individuals. At times you may deem it harder for you to get an answer to a question by calling the insurance company or hospital than by asking the physician, but remember relying on the physician for all answers may shorten the time you have to ask other questions which only the physician can answer and thus deserve greater priority.

If there are many questions, prepare a well organized list. This is likely to save considerable time as many may be answerable together quickly and with the production of less ambiguity. If there are questions which do not require an explanation, consider faxing them to the office in such a way a nurse or assistant can obtain the answers and return the "call" without trying to establish phone contact with the physician.




F. Specialization and Costs

A frequent complaint leveled at physicians is the fact primary care physicians often stop visiting terminally ill patients in the hospital or at home on a routine schedule. As we have noted above, this can cause significant aggravation and a feeling of abandonment, especially when the physician has essentially become a family member during the patient,s terminal illness.

If such happens, some leniency should be allowed considering the present scheme of payment for physician services. While it is true that payment shouldn,t be everything, physicians are in practice at least in part to make money. And when insurance companies or the government refuses to reimburse primary care physicians for their time once the patient is also being charged by a specialist [similar to coverage for hospice care] one might better understand the physicians, reluctance to maintain previous responsibilities.

G. Variability in Desired Treatment Philosophies

Physicians are often unaware of the desired approach to care of patients and families, especially when there are multiple physicians involved and many family members making different decisions. Absent specific agreements between the patient, family, and physician, suggested medical care is always likely to appear inappropriate to some. How much care should be addressed to the remote chance of cure? How much to prolongation of life? How much to maintaining the patient,s ability to communicate with family and friends? How much to relief of suffering? How much money is available to cover uninsured care? And how would the family feel if the patient were to die as a result of therapy addressed to relieve pain or suffering?

This last question, which will be dealt with more extensively in the chapter on double-effect therapy, is of particular importance. A recent, much quoted study of the attitudes of health care providers to terminally ill patients among doctors, nurses, and residents, showed that the vast majority thought terminally ill patients were generally overtreated, but they were undertreated for pain. The main reason for undertreatment was fear of causing an earlier death, largely stemming from uncertainty about the family,s potential reaction if this were to happen. As will be mentioned many times throughout this book, an understanding between health care providers and family related to the balance of aggressive therapy and comfort care, between the values of continued life and prolonged suffering, may be the most issue to be addressed by families who seek better care of their dying relative.

H. Dealing with Families in Conflict

Physicians find it extremely difficult to deal with families in conflict. They fear secondary agendas in issues raised and are often led by compassion for the dying person who is placed in a position of having to try to avoid family squabbles while dealing with his or her own existential concerns. This does not mean physicians wish to avoid bona fide medical questions, even if they are presented as involving a disagreement between family members, but when this happens and they are asked to help in decision-making, they are particularly prone to get angry when their advise is countermanded as part of the family squabble.

For example, the physician tells the family the patient is no longer taking enough food and fluids to maintain nutrition and hydration, a feeding tube will have to be placed. The family cannot decide whether to go ahead or not and the physician is asked his opinion. His opinion is that placement of a tube would just be prolonging death, not life, for the patient will never regain the ability to think. The family continues to disagree with the minority threatening to bring a law suit if the physician goes along with the majority who wish to refuse artificial sustenance. [Note: if the family had decided either way before or after asking his opinion, their decision could probably be followed without difficulty -- physicians are only advisors, the final decisions rest with the patient and the next-of-kin. But if the caring physician accepts this request to essentially make the final decision and then has it thrown back, one can only anticipate a tendency for the physician to withdraw in the future.]

I. Dealing with the Law

Physicians do not know the law and are very antagonistic to getting involved with legal matters. When in doubt, it is much easier for the physician to just continue than to forsake aggressive care. This is another problem which is likely to be aggravated by the presence of family conflict.

J. Miscommunications

There is always a potential problem of miscommunication between patients, families and health care providers, but the recent legal requirement that providers discuss advance medical directives with patients and families at the time of admission to hospitals and other facilities has created a new type of misunderstanding. Because of this recent awareness of patient,s rights, physicians are increasingly desirous of documenting where patient,s stand regarding terminal care. To obtain this information, they may come to push for decisions on the part of the patient and family too early in the course of a disease process, giving the impression death is imminent or medical situations irreversible when they are not.

Too often I have recently been asked by families whether they should go along with the physician,s suggestion to write a DNR order [discussed below] or to forsake care in a situation in which the patient may be perfectly capable of speaking for himself or herself, or in situations which are clearly reversible. When I ask why the doctor thinks the DNR order or discontinuation of aggressive care is advisable, I find out it has not been truly advised, just mentioned as a possible course of treatment for the patient and family to consider.

It is important for families to separate the two -- the one, an actual suggestion from the doctor to limit care to comfort measures and the second, a legal requirement on the part of health care providers to discuss with the patient their right to direct their own care through a terminal illness.

K. Physicians Facing Their Own Mortality

Each time a physician deals with death, he or she is forced to face personal mortality. Doctors react differently, creating different responses to patients and families. Most commonly they withhold personal feelings from the dying patient and family, often with purposeful intent -- "the physicians,s role is a port in the storm, not to show emotions." In contrast, many other physicians believe in a sharing of feelings and openness when dealing with emotions. Occasionally physicians do neither, either by denying their own feelings or by dealing with the situation "as a learning experience."

Most medical commentators suggest it is best for physicians to share their own feelings with patients and families, but many fine physicians are unable to do so and will persist in choosing an alternative approach.

9.04 Telling Patients the Truth

One area of great potential disagreement both among providers and families is the necessity of telling patients the truth about their illnesses. Thirty years ago it was standard procedure for physicians to keep a poor prognosis secret unless specifically asked by the patient in a serious and repetitive manner.

As the medical profession came to increasingly accept the concept of autonomy, there came a greater need for informing the patient, but clinical practitioners were slower to move to open communication than were theoretical scholars who came to feel the patient,s "right to know" constituted an obligation on the part of the physician to tell all.

In retrospect, it is still hard to know the relative merits of telling everything and limiting what is told to that which is asked. Most physicians believe patients who do not ask directly are still aware when they are terminally ill but purposely choose not to ask in order to maintain their inner desires to deny reality. Recognizing that once stated, the facts cannot be denied, most doctors still tend to resist total honesty as long as that appears to be the wishes of the patient, unless there is a clear need to tell in the patient,s best interests.

Remember, the need to tell is seldom an emergency. If the patient asks, I believe law and ethics requires the patient be told. In the absence of questions, however, I still believe as others trained at my time were taught that as long as the family is well aware that death is approaching and sees no need they be told, there is no inherent need to go beyond answering those questions which the patient chooses to ask to make the full situation known. [clearly, others would disagree with this approach.]

At the same time, I believe that if the family believes the patient should be told and prefers the doctor tell the patient in private, that is the doctor,s duty. Before doing so, I would suggest the physician discussed it with the family to obtain information about the patient,s religion or spiritualism, the availability of related resources in their life, and a basic understanding of the family,s feelings about terminal care, including their personal cultural and psychological attitudes about death. This will put the physician in a far better position to answer the patient,s questions after he or she is told that life is coming to an end.

[Note: In the past, physicians may have even been reluctant to share the truth with the family. This no longer seems to be the case once the diagnosis is clearly established. In contrast, because of the great variability in disease progression in various patients, most reasonable physicians remain reluctant to give a time prognosis or to try to prognosticate what symptoms are likely to appear in any individual case.]

[I cannot leave this topic without mentioning a situation I was put in some twenty years ago by the wife of a man with rapidly progressive malignant melanoma which had just been diagnosed by liver biopsy. Because death was anticipated in less than a month and because he had business arrangements I knew he would want to make, I agreed with his wife he should be told he was dying even though he hadn,t asked. [I suspected he had figured it out already] As always under the circumstances, I offered to tell him. The wife said she certainly wanted me to do so, "but tell it to him softly, so it doesn,t hurt." Her request in fact hurt me deeply. I really cared for the man. I told him, but there was no way to honor her second request. I couldn,t even find a way to do so without hurting myself.]

9.05 Desirability of Working with Patients, Not Surrogates

A further outgrowth of the modern trend to autonomy is a growing desire on the part of the physician to work with the patient as opposed to the family in determining appropriate terminal care. In some ways this new direction tends to complicate communications with families, who in the past were given much more of a final say than is now the case. Remember when dealing with physicians that when the desires of the family and patient are at odds, it is the physician,s obligation to follow the patient,s directives even if the family,s would seem more in keeping with the patient,s best interests. Remember also that as long as the patient retains decision-making capacity, the physician must check with the patient before significant changes in approach to patient care are undertaken -- and that even if the patient has lost decision-making capacity, the family cannot direct the forsaking of non-comfort care as long as the patient, competent or not, directs such treatment be continued.

In large families in particular, the physician can be greatly helped in such situations by the patient naming a representative spokesperson either by orally telling the physician or through a written durable power of attorney for medical decision-making.

9.06 Balancing Symptom Relief and Sedation

Because many of the drugs used to relieve pain, shortness of breath, anxiety, depression, nausea, itching and similar symptoms produce sedation, there is frequently a trade-off which has to be anticipated between symptom relief and sedation. Obviously, the patient is the person who should make this choice, but this produces two common problems. First, it is not always easy for the physician to regulate the medications to achieve the balance desired by the patient, the dose required to relieve the symptoms often producing sedation greater than the patient would want. Second, attempts at minimizing medication, especially for pain, is likely to leave the family in the position of having to suffer along with the patient even though it may be at the patient,s direction.

9.07 Financial Issues

It is an unfortunate truth that the United States remains one of the few nations in which terminally ill patients must worry they will not receive the best available terminal care for financial reasons. At the same time, it is important to put this reality in the appropriate perspective. Although everyone may not want to pay for the most exotic care or be able to do so, it is great to be treated in America where the best of care is at least available if the choice is to spend all available resources to obtain such care. At the same time, it is reassuring to know the mainstay of terminal therapy, drugs like morphine, are relatively inexpensive and Medicare has slowly been expanded to cover such important aspects of terminal care as hospice. In addition, as of 1996 Medicare has established a specific billing code for palliative-care hospital admissions which is making coverage for such care easier in the present than it has been in the past. This leaves the major problem of financing terminal care the cost of home-care, which is not covered by Medicare or most insurance. This in turn provides an incentive to hospitalize patients even those this is likely to lead to more aggressive care than would be deemed appropriate in the home care setting.

Because the patient himself or herself is likely to be concerned about expenses, it is wise for the family to try to find out just which expenses will be covered by Medicare, personal insurance, a Managed Care Plan, or other potential sources of private or public financing in anticipation of the cost of terminal care even if the patient makes no efforts in this regard. In addition, it is wise for the family to come to some agreement about what is reasonable under the family,s general financial circumstances. In reaching decisions, be aware the patient may be even more worried about unwarranted costs of treatment depleting assets than are the family members who stand to inherit those assets. This may lead the patient to make up excuses for refusing specific care when, in fact, it is the cost that has fostered the decision. This is particularly distressing when, in fact, the care in question would be covered by third party insurers but this is unknown to the patient who does not want to broach the subject for fear of disclosing his or her personal reasons for trying to reduce costs.

The inroads of managed care on medical practice and the threatened extension of managed care to many Medicare recipients poses a particular problem in the near future. A recent advertisement for such company boasted that they had cut the costs of care in the last year of life by twenty-five percent. How much of this cost reduction was based on decreased payment for undesired care, for treatment undertaken in an attempt to reverse treatable disease, or for treatment aimed at improved comfort was not addressed in the claim. Until this is determined, it is hard to say how much cost reduction is desirable. What is evident is an increased need on the part of families to be vigil, and to complain loudly when palliative care of a terminally ill patient is denied or under-utilized.

Keep in mind that although physicians are supposed to tell patients when more effective care than is being offered could be available outside the insurance system, this does not always happen. Because of this, it may be wise for family members to ask the physician at times if additional care is possible, even if it has to be paid for out-of-pocket. And always remember, the squeaky wheel gets the grease -- repeated request and demands from managed care companies often lead to re-evaluation of circumstances and fee coverage.

Family decisions regarding the financing of care should be made known to health care providers who are likely to be considering health insurance coverage in planning terminal care. If family finances are limited and health care coverage poor, the physician should know that exhaustion of finances in a vain attempt to maintain patient,s unwarranted hopes in the early course of disease may leave the patient unable to pay for much needed palliative care later in the illness.

Note one area in which a conflict is particularly likely to arise is in the payment for so-called "patient controlled analgesia" (PCA) which requires rather expensive equipment to allow the patient to self-determine the timing of additional doses of morphine or other narcotics. Similarly, some insurance plans provide payment for morphine in an institution, but not at home.

This is not to say more expensive care is necessarily better. To the contrary, in most cases the most meaningful care is probably among the most inexpensive, care by family members in one,s own bed at home receiving oral morphine on a regular basis to relieve constant symptoms and additional morphine as needed by injections given with the help of hospice care providers and family members as desired by the patient.

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

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