CHAPTER 17. SPIRITUALITY AND TERMINAL ILLNESS

 

17.01 Spirituality; Introduction

17.02 Spirituality; Definition

17.03 Spirituality as Different Than Religion

17.04 Uniqueness of Spirituality

17.05 Reasons for Trying to Understand the Patientís Spirituality

17.06 Promoting Spirituality

17.07 Efforts to Determine Spirituality

APPENDIX -- Issues Related to Spiritualism

I. Religion

II. Attitude Toward Self/Spirituality

III. Support Family/Friends

IV. Illness/Terminal Care

17.01 Spirituality; Introduction

As modern medicine comes to accept that care of the terminally ill extends far beyond medical therapy, it is forced to try to understand and integrate treatment plans with forces such as religion and spirituality. It is not easy. Physicians as a group are not particularly religious and generally have been trained not to insinuate their own religious beliefs on patients who may very well hold very different beliefs. Fortunately, most patients who are religious have other support mechanisms through clergy or religious organizations to fulfill these needs, but that is not as true of the newer concepts of individual beliefs and concerns which have come to be designated as "spirituality."

Because of the huge diversity in religious beliefs surrounding death and dying, this book, like the medical profession, will generally leave it to others to discuss in detail. At the same time, while recognizing we are not up to the task, it would be inappropriate, even disrespectful, not to recognize the tremendous importance of religious teaching in allaying the fears of the dying. Undoubtedly, it is those who truly believe in God and religion that most readily accept death, their beliefs providing a framework of acceptance based on faith, a divine presence and an understanding of the afterlife which supports a continued coherence of the individual, and establishing values, directions and procedure which relieves the individual from having to decide what should be done. In addition, religious practices such as prayer and religious attendance can be wonderfully beneficial in coping with the stressors of daily living, while many rituals provide a framework for relaxation. Participation in a religious community, or simple awareness of an on-going relationship with a higher power, may afford comfort in contrast with the alienation which is so prevalent in the rest of our society.

So, too, may spirituality support acceptance of death through the support it gives us in dealing with the unknown. As an area of considerable recent discussion which now appears to be moving toward a consensus, this chapter will attempt to clarify its part in comforting the terminally ill patient.

17.02 Spirituality; Definition

If we are to talk about the relationship of spirituality to care of the terminally ill patient, we need to start by trying to develop a mutual understanding of what spirituality is in the context of this book. In trying to develop a workable, informative definition, most commentators stress its uniqueness to the individual, its broad base in individual thoughts about life, its influence on the individualís relationships to other people, the unknown and the world in general, and its existence outside the realm of tangible things and events. Some examples may be helpful:

"Spirituality can be defined as a belief system focusing on intangible elements that imparts vitality and meaning to lifeís events."

"Spirituality is viewed as the unifying force or vital principle that integrates all manifestations of a human being." [Websterís Dictionary]

"Spirituality is defined as Ďan individualís inner resource and the basic value around which all other values are focused and which guides a personís conduct.í" [The 1971 White House Conference on Aging]

"Spirituality is defined as the essence of the person or an expression of his or her central source. Spirituality forms who we are."

"Spirituality is not a separate part of an individual but rather embodies the individualís entire being. The spiritual dimension integrates and transcends both biologic and psychosocial nature. The term transcendent refers to that which exists apart from the material world, beyond the limits of possible human experience or knowledge, a power beyond the natural and rational, or a force that unites all beings with the universe."

"Spirituality is the life principle that pervades a personís entire being, including volitional, emotional, moral, ethical, intellectual, and physical dimensions, and generates a capacity for transcendent values."

"Spirit refers to humanityís inner resources especially ... its ultimate concern, the basic value around which all other values are focused, the central philosophy of a life which guides a personís conduct. This ultimate concern is a generic or basic faith that positively affirms life, as distinguished from tradition or particular faith with its doctrine, dogma, and rituals."

The spiritual dimension is "the part of a person that allows God-consciousness and the possibility of relatedness to God, however God is defined."

"Most conceptualizations of spirituality posit an energy, or spectrum of energies, unrecognized by modern scientific methods, that can be accessed to affect physical events. Called by such names as life force, parna, chi, or ruach, this energy exists in the individual and in the cosmos and in the relationship between them. Wellness depends on, and is a manifestation of, the proper balance of this energy, whereas illness and disease reflect imbalance or blockage in the affected individualís normal energy flow."

"The spiritual dimension transcends the individual and provides a common bond with all humans. The concept of transcendence is inherent in most forms of spirituality and takes on particular importance as one approaches the end of life. It is transcendence that restores wholeness to an individual after personal suffering. As a result of suffering, the individual comes closer to identifying meaning in life through sharing in the human experience."

"Spiritualism relates to human capacities to conceptualize and experience transcendence. Transcendence is human capacity to go beyond the physical into a spiritual world."

"The wholesomeness of oneís spirit can be considered spiritual well-being just as wholeness of body or mind is considered a state of well-being. More formally, spiritual well-being is defined as Ďthe affirmation of life in relationship with God, self, community and environment that nurtures and celebrates wholeness.í"

In trying to encompass the above formulations, the author likes the following analysis, although it seems to understate the importance of relationships, relatedness, connectedness, and relational values with other individuals, such as love, justice, compassion, and integration as part of spirituality:

The spiritual dimension has been characterized as involving four aspects. First, the spiritual dimension is a unifying force that integrates and transcends the physical, emotional, and social dimensions. Second, it enables and motivates one to find purpose and meaning in life and to relate to God, however God or an Ultimate Other is defined. Third, because the spiritual dimension transcends the individual, it provides a common bond between individuals, enabling them to share themselves with others. Fourth, the spiritual dimension is based on individual perceptions and beliefs that will guide behavior. Thus spirituality can be considered a conscious or unconscious belief that relates the individual to the world and gives meaning and definition to existence.

17.03 Spirituality as Different Than Religion

The terms "religiousness" and "spirituality" are often used interchangeably. One of my advisors in writing this book made a point that the original use of the word "spirituality" to express the concept developed above was a poor choice for this very reason. Another told me no matter what I say in the book, most readers will still think of spirituality as another word for religion. I hope not, for the author believes it would be misleading to infer that spirituality is based on an adherence to any set of beliefs and practices set forth by an organized church or religious institution. At the same time, one can admittedly define religion much more broadly, so as to encompass the individuals unique formulation of thoughts about living, be they social, cultural, theological, developmental, relational etc., which make up the essence of spirituality. Looked at in this extreme, it would be reasonable to consider spirituality to be an individualís religion, be the individual a believer, atheist, agnostic, or secular humanist.

As has been noted, physicians tend to dismiss spirituality, in spite of the fact their very choice of education and occupation evidence a spirituality based on caring for others and the role of giving in this world. Because they often fail to perceive the relevance of individual spirituality to patient care, the clergy also invites problems when it equates it to religion. By so doing, clergy have repeatedly tried to force discussion of spirituality back into religious molds which frequently do not fit the beliefs of the patient, thus only adding to his or her distress.

Just as it is important for family members to support the terminal patientís religious beliefs, it is also important to support his or her unique spirituality and not to assume the two are the same. To prevent this from happening, family members of a terminally ill patient should take time to consciously evaluate, or, more properly perhaps, reevaluate, the patientís spirituality as it exists and evolves through the dying process. In doing so, one should recognize this is likely to be a time of intense devotion to spiritual matters by the sick individual occurring during a period of increasing dependency, when the individual must increasingly rely on others to obtain desired source materials and to arrange meetings with other individuals for conversational purposes. Similarly, it is likely to be a time when the individual is likely to share thoughts and beliefs which have remained private for much of a lifetime.

To avoid overemphasizing either the religious or the spiritual, it is well to keep in mind that most patients fall into one of four groups. The first of these group are those true believers who are both inwardly and outwardly religious, accepting of its dogma, procedures and rituals as the way to live and die, in whom religion and spirituality tend to merge. On the other extreme are those who profess no association with organized religion but choose to relate to their own basic elements of humanity and humanness as being their spirituality, natural spirit or personal religion. Third are those who consider themselves to be more or less religious through life, who have outwardly partaken of most religious protocols and dogma, but who have inwardly relied, often subconsciously, on individual beliefs to fill in perceived holes in religion and to have thus developed their own spirituality in relating to life. Finally there are those who believe in religious teachings and feel close to their religion but have turned against organized religious expression in life.

It is failure to recognize these last two groups which is likely to be destructive in dealing with the terminally ill patient. If family members consider the patient to be fully accepting of religion, they may fail to take account of the patientís personal spirituality and, like the clergy, try in vain to limit their search for spiritual questions to religious teachings. Alternatively, if family members take prior lack of ongoing involvement in religious practices during life to indicate the lack of interest in religion, the potential benefits of the patient partaking in religious counseling may not be recognized or suggested.

17.04 Uniqueness of Spirituality

An underlying, almost unifying principle of spirituality is its uniqueness. In the absence of accepted ritual, one area of uniqueness is the extent of its expression, with some people talking openly and repeatedly about their beliefs as being spiritual in nature, and others choosing to keep their beliefs private or not suggesting that their beliefs have taken on a spiritual nature within. This tends to change, however, as one faces death. At this time, most people tend to search their inner self for appreciation of their own life and, with this, find a desire to discuss that uniqueness of self which has led them to behave as they have throughout life.

For those who want to help loved-ones through their suffering and quest for meaning in having lived, it is not time to question the individualís unique spirituality any more than it is time to question their religion. It is time to accept itís uniqueness and to help the individual find solace in dealing with it as it exists, accepting that almost anything can have tremendous spiritualistic meaning, from desires of universal recognition to appreciation of a particular symphony.

17.05 Reasons for Trying to Understand the Patientís Spirituality

Patients may look at spirituality as a means of advancing their own physical well-being, but the absence of generally accepted scientific evidence to support significant effects of spirituality on mortality makes it hard for physicians to accept such claims.

At the same time, there is ample evidence that fulfilling oneís spiritual goals in life leads to a general sense of well-being and relief of existential suffering during the terminal phase of illness. As has been said, "spirituality provides a sense of coherence that offers meaning to oneís existence as a human being. The experience of personal meaning, purpose, or truth brings integrity to the individualís sense of self and the world. This aspect of spirituality is particularly significant in the face of uncertainty and change, as typified by the terminally ill patient.... Through transcendence the ill person experiences a Ďrising aboveí limiting conditions, which are often a cause of suffering; the person feels part of a greater whole, nature, cosmos or higher being. Such an experience may provide much more than a temporary respite from cares and worries of our daily life. Sometimes, in revealing a whole new order of things, it profoundly transforms life."

In contrast to those who believe spirituality actually prolongs life and minimizes physical illness, many believe spirituality is a co-existent factor among others which effect patient wellness during terminal illness, helping them to feel whole. For them, being spiritual is significantly related to a decreased fear of death, decreased discomfort, and a positive perspective of death among the seriously ill.

In conformity with this belief it has been noted:

Although the fighter and the optimist have been championed in the literature as dealing effectively with cancer, the situation may be that such persons have a social support system that buffers against stress and facilitates their access to medical care. Their attitude may have nothing to do with their illness but everything to do with seeking friends to support them during a difficult time.

Similarly, it has been said:

Spiritual interventions frequently stimulate patients to experience and express their illness in new ways. The person feels "healed" but not "cured," and may experience a profound sense of psychologic and spiritual well-being and wholeness, even if disease persists. Additionally and importantly, the incorporation of spiritual healing modalities into an overall treatment plan is not intended to replace traditional biomedical interventions, but to complement them. Many patients feel that by infusing a "secular" modality with spiritual content the latter can enhance the impact of the former.

17.06 Promoting Spirituality

The challenge for families as well as health care providers is to recognize the spiritual component of the patient, both as personally developed over a lifetime and as it relates to cultural and religious forces in his or her life which create differences in attitudes toward illness, suffering, and death. Failure to discuss these beliefs and practices explicitly may lead to incomplete personal assessments which preclude the ability to make appropriate additional resources available to those terminally ill individuals who desire them.

By addressing spirituality in a nonjudgmental way, family and health care providers "legitimizes" for the patient the importance of spirituality as well as religion, and confirms their relevance in the medical and home setting. When appropriate, the providers can make suggestions regarding the utilization of spiritually based supports.

When trying to help a terminally ill patient reach spiritual satisfaction in life, remember the patientís likely concerns: "Did I love well, did I live fully, and did I learn to let go?" Loving well asks the patient to reflect upon whether he or she placed love of family, friends, and community above material possessions and whether the love was offered unconditionally. Living fully centers on the preciousness of life, an appreciation of the beauty of nature, and an openness to experiencing all life has to offer without being limited by material attachments. Letting go, which is also the central theme in many religious practices, asks the patient to place trust in a greater force, to accept lifeís challenges with wisdom and compassion, and to forgive without judgment.

These themes echo the spiritual needs of the dying, which have been identified as the need to find personal meaning in life and death, the need to give and receive love, the need for a sense of forgiveness, and the need to maintain hope. For the terminally ill, the aim is to find spiritual meaning in illness and suffering. This means forsaking the answer to the question "Why did this have to happen to me?" for one which answers the question, "Now that the tragedy has happened, what am I going to do about it?"

In attempting to help a patient achieve religious and/or spiritual wholeness, one should evaluate potential obstacles: lack of structure, lack of access to clergy or appropriate therapists, lack of privacy, and reluctance on the part of caregivers to address spiritual issues. In this approach, lack of structure refers to the lack of required ritual or spiritual practices which would provide closure or reconciliation for the dying patient. Lack of clergy or therapists is related not to the number of personnel but rather to the lack of understanding, compassion, and acceptance of the dying patients, among pastoral and other workers. Too often, ritual and rote prayer or approaches are used by clergy and therapists as a means of avoiding real communication with the patient. Lack of privacy speaks to the fact that most individuals still die in the hospital, surrounded by machinery and isolated from family and loved ones. The quiet and privacy needed for spiritual reflection are difficult to obtain in the hospital setting because of the high level of activity and frequent interruptions as well as semi-private and ward accommodations which do not allow well for private conversations. Reluctance on the part of caregivers to address spiritual issues is frequently a result of caregiversí discomfort with or failure to be in touch with their own spirituality.

17.07 Efforts to Determine Spirituality

Because spirituality is so unique and so personal, a caregiver interested in helping the patient obtain spiritual satisfaction at the end of life must first determine the patientís beliefs as they relate to his or her remaining life and impending death. Appendix A, which follows immediately, may be helpful in suggesting issues which may fit the particular situation with any one particular patient.

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APPENDIX A

 

I. Religion

1. Does the patient belong to a religious community? If so, how would they identify it in their own words?

2. What religious practices has the individual undertaken in the past? Does he or she undertake prayer or meditation? Have they been found to be beneficial? Are they important to the individual? Does the patient wish to continue them?

3. How important is religion and religious identification to the individual? Why is the religion important? Why is the identification important? Do they rely on religion for faith? For hope? If yes, how does this come about?

4. What is the patientís belief in God or a Higher Power? What role does God or the Higher Power play in their life? How significant is such belief in God or a Higher Power? Do they worship the entity? How? Why?

5. Does the individual rely on religious or spiritual text materials? Prayers? Symbols or practices?

6. Has being sick made a difference in the individualís religious practices? In their practice of praying? With what results?

7. What aspects of their religion would the patient want known to their physicians? caregivers? friends?

8. Does the individual believe in a life after death? If so, what is it like? What determines if they will be allowed to partake in that life?

II. Attitude Toward Self/Spirituality

1. Does the patient belong to a spiritual community?

2. How important is spirituality and spiritualistic identification to the individual? Why is the spirituality important? Why is the identification important? Do they equate spirituality to religion?

3. Does the individual rely on spirituality for faith? For hope? If yes, how does this come about?

4. What spiritualistic practices has the individual undertaken in the past? Have they been found to be beneficial? Are they important to the individual? Does the patient wish to continue them?

5. What does the individual consider to be his or her prime values in life? Has being sick changed these values? In what way?

6. Does the individual think at all in terms of their life experiences as being related to rewards or punishment? Do they think of their terminal illness as being related to rewards or punishment? In terms of justice?

7. Does the individual consider himself or herself to have been ethical in dealing with society? If so, how? If not, how not?

8. Does the individual rely on spiritual text materials? Symbols or practices? Would they desire more materials? More opportunity for expression?

9. What aspects of their spirituality would the patient want known to their physicians? caregivers? friends?

10. Does the individual see any purpose in living through a terminal illness? Does it give them additional understanding of the world and humanity? Do they welcome the opportunity to wind-up various loose-ends in their life or would they rather have died suddenly?

11. Does the individual feel any guilt about how they lived their life? Do they consider themselves to be evil? Do they consider their illness to be at all related to their guilt-producing actions in the past?

12. Does the individual consider there to be any benefits from suffering? If so, what benefits? Does it bring them closer to God? Does their ability to handle suffering reflect on their own value in life?

III. Support Family/Friends

1. Who is the most important person in the individualís life?

2. Is this the person the individual turns to when he or she needs help? If so, is/are they available? In what ways do they help? If not, what individual do they turn to? What source do they turn to? How helpful is this person or source?

3. What or who does the individual consider his or her major source of strength and hope to be? Does this source alleviate the individualís fears? Their need for special help? How?

4. Is there anything which is especially frightening or meaningful to the individual?

5. Looking back in retrospect over their life, how does the individual view their relationship with their spouse? Their children? Their family? With society in general? With friends?

 

IV. Illness/Terminal Care

1. What aspect of being sick has bothered the individual the most?

2. What changes in the individualís life has bothered them the most? Why?

3. What does the patient think is going to happen?

4. Has being sick made a difference in how the individual feels about God? About religion? About spirituality? About their own religious beliefs? About their own spirituality beliefs?

5. What religious or spiritual meaning has the individual taken away from suffering through their terminal illness so far? Do they have any expectations regarding additional meanings in the days ahead?


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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