Quality of Life--A Nursing Challenge Volume 2, Issue 3
Patients with cancer face myriad problems in the course of treatment. Some of these problems may be unintentionally compounded by the reluctance of health-care professionals to address spiritual and religious concerns. This article attempts to define spirituality and religion, and examines the impact of spiritual well-being on the patient and his or her illness. It also presents some ways in which healthcare professionals can address these concerns while still remaining true to their own beliefs.
Freedom of religion in the United States has meant that Americans affirm a plethora of religions, and many deny any religious ties. In this author's view, that great American experiment in religious freedom and pluralism is an unqualified blessing, but it makes it difficult for caregivers treating patients with cancer to know how to help them with their religious needs. Typically, that means nurses and physicians do their best not to say anything at all about religion.
Part of their silence is motivated by a fear of offending anyone. Nurses and physicians seldom have the time and perhaps not even the inclination to talk with patients about anything not directly related to the physical and emotional state of the patient, and even if they do, they probably would not talk about religion. Religion and politics are notoriously the subjects you do not raise in initial conversations with anyone in America, and certainly not someone whom you are busy treating and therefore can ill afford to alienate.
Truth to tell, though, another important reason why health-care professionals do not talk about religion with their patients is that they feel inadequate to the task. During their training, after all, instructors usually do not address this element in patient care. In 1992, the UCLA School of Medicine instituted a new course called "Doctoring," which includes attention to the element of spirituality in caring for patients, but the program is very new, and I know of no other school training healthcare professionals which even broaches the subject. Fear of offending patients and fear of dealing with the subject in the first place, then, combine to make. silence the general rule on this matter.
While such silence is certainly understandable under some circumstances, it radically limits the kind of help nurses and physicians can offer their patients with cancer. Silence on these subjects makes it seem that health-care professionals do not want to be bothered with patients' religious urgings at such a critical time, and are coldly focused on the physical aspects of their being. This frankly dehumanizes both parties in the relationship. Health-care professionals are led to see patients as machines which have broken down and which they are trying to fix, and patients, in turn, see health-care professionals as glorified mechanics. People, though, are not separately body and soul; they are integrated human beings, in which every element has significant and often critical effects on every other element. Therefore, ignoring the spiritual element of patient care effectively means that one fails in providing adequate patient care.
Those people whose cancer can be cured or at least brought under control by modern medicine usually feel grateful for the skill of their healers, but even they can be better served if their caregivers pay at least minimal attention to the religious questions they have throughout their bouts with cancer. They usually do not expect that the nurses and physicians who treat them will be expert in this area, but total silence on the matter makes healthcare professionals seem cold and unfeeling.
If that is true for those patients who can be cured, how much more so is it the case for those who cannot be. All that health professionals can do in such circumstances is to help patients understand the prognosis of their illnesses and then be a source of comfort for them as they suffer through it.
Nurses and (especially) physicians, though, all too often psychologically and even physically withdraw from such people, in some cases even failing to inform them about what is likely to happen, for incurable illnesses threaten the health professionals' sense of competence and cause them great frustration. Moreover, people at the point of dying sometimes transfer their anger to the physicians and nurses who cannot cure them. Such psychological transference, of course, makes no rational sense, for it is not that the caregivers want the patient to die, but simply that they cannot prevent that from happening. Despite the irrationality of it, though, patients commonly engage in such transference, at least for awhile. Consequently, physicians and nurses would much rather absent themselves from the scene in which they will probably be the target of the patient's anger, and will, in addition, have to confront their own limitations.
That is understandable, but it is also a shame, both for the patients and for the caregivers. Patients, of course, feel abandoned when that happens, at least psychologically. It is precisely such feelings which lead to another kind of anger and, in extreme cases, to lawsuits. Some attention to patients' spiritual needs can avoid this and, on the contrary, make patients feel good about the health care they are getting.
Nurses and physicians should do this for themselves, too, however. Health professionals are not helpless when they cannot physically cure the patient; they can still afford substantial help if they only learn how to shift the focus of their concern from primarily physical matters to psychological and spiritual ones. Again, patients with incurable cancer, just like those with curable varieties, know full well that health professionals are not trained to be professionals in spiritual care. However, some attention to the matter on the part of nurses and physicians can help immeasurably in moving patients from their own focus on their physical being to considering how they can enlist the other parts of what makes them human to help themselves through this. Moreover, it will make the nurses and physicians involved feel much better about themselves, for they are continuing to care for their patients, albeit in a different form. After all, helping sick people is the reason why almost all of them selected this profession in the first place.
In order to understand what nurses and physicians can do, it is important to spell out what we mean by spiritual life in the first place. People mean many different things when they refer to the "spiritual" side of life, but I would suggest that the various definitions generally fall into three categories: (1) a sense of inner wholeness and meaning; (2) moral rectitude; and (3) a linkage with the transcendent.
Probably the most common thing people want to denote when they speak about the spiritual component of life is the nonphysical parts of it--the elements, in other words, of their inner being, their "spirit," here used in contrast to their body. In this first sense of the term, people sometimes want to refer to their psychological state and sometimes to their moral state. Those are, respectively, the first and second meanings on our list of three.
In the first sense, then, people seeking spiritual meaning are looking for a sense of wholeness. They want to feel that the various vicissitudes of life either make sense in the larger scheme of things in some way, or, if they do not, they want to feel that they nevertheless have the strength to cope with life somehow. This inner peace is not necessarily a sense of quietude, although it often is, at least in the end. It can, however, initially take the form of expressions of anger and frustration at their inability to overcome the limitations of their lives, whether those come from their bodies, their minds, their emotions, or their relationships with other people. They want to know that such feelings have not gone unnoticed by those near and dear to them, and they want such feelings to be validated as appropriate or at least as tolerable on the part of such people. They also want such people to support them in their feelings and in their attempts to deal with them. In this mode of spirituality, they do not want judgments from others and maybe not even suggestions (although some might want the latter); their overwhelming need is for a listening ear, an understanding presence, a friendly hand. They thus gain spiritual "comfort," even if they have not been able to resolve the problem which thrust them into turmoil in the first place.
Health-care professionals used to working toward clearly definable goals of physical recovery and function may find this all rather spooky and maybe even annoying, but it is important to remember the concept of human beings underlying this kind of spirituality. Human beings are not just machines that either accomplish or fail to accomplish their ends; the pragmatics of resolving problems, including physical ones, is not all that matters to people. People are also psychological and emotional beings, who respond to what is happening in their lives with inner feeling and need help in dealing with such responses. From a practical point of view, this makes people much less efficient than unemotional robots would be, but on the other hand, it is also part of what makes them distinctly human. It is what makes them unique and interesting, what gives them verve, and what makes them who they are. Moreover, as we have learned increasingly over the years, this part of human beings is not separate and distinct from their physical components, but rather integrated with their bodies in such a way that those who would care for the latter must inevitably pay attention to the former as well.
Another part of human spirituality is the moral side of life. A person's inner being is not only psychological and emotional, but moral as well. Therefore people stricken with traumatic illness, and especially those facing impending death, will inevitably ask difficult moral questions. The issue will not just be what they can do and what will be the consequences of the various things they can do; the issue will be what they should do. And that question will not be just an inquiry asking for practical advice, but a true quest for moral rectitude. They might ask, for example, "Should I (not just can I) fill out a Durable Power of Attorney for Health Care? If so, what may I include in it? I want to know not just what the law allows or what I can get the nurse or physician to do; I want to know what I should do because I want to die a good person. I may not have always succeeded in living out my moral commitments in my life, but I surely want to end my life 'with clean hands and a pure heart,' as the Psalmist says, if I can possibly do so. I therefore want to talk about these moral quandaries with people who care for me and whom I respect."
The psychological, emotional, and moral components of spiritual care are ultimately linked to a person's wider understanding of the nature of human life, the world, and God. The word "religion," in fact, means linkages, coming from the same Latin root as the word "ligament." Religions, then, link us to the broader context of things; they relate us to other human beings, to the rest of the animate and inanimate world, and, at least in the Western world, to God. It is precisely when people face the trauma of catastrophic illness that they are the most likely to ask serious questions about all these things, for the illness threatens all their normal ties to the world. Thus patients with cancer may well raise these deeper spiritual questions, even if they never affirmed much religion in their lives before.
What should nurses and physicians do with all this? They may well feel out of their league, for their medical and nursing training did not prepare them to help people with such problems. Moreover, as we noted above, on such questions America is blessed with a plethora of views. If silence is not the answer, then, how should health-care professionals treat these issues?
The first form of spirituality is probably most amenable to at least some intervention on the part of nurses and physicians. People needing to vent can be helped by any other caring human being, and so can those needing a reassuring word, a sympathetic hand, a listening ear. Clearly, there are limits of time, energy, skill, and ultimately, willingness which will be operative here. Furthermore, the primary burden of providing such spiritual care properly falls on family, friends, and clergy; but for reasons developed above, this does not relieve nurses and physicians from this kind of care entirely. On the contrary, health-care professionals should be on the lookout for these emotional needs and should see it as their duty to provide for them, at least to some extent, as part of their calling to heal the person, and not just the physical machine, in their care.
When it comes to the moral component of spiritual care, one is immediately aware of the varying conceptions of what is ideal behavior and even what is minimally acceptable action. Consequently, health-care professionals may well refrain from being too actively involved in the moral decisions that must be made for fear of imposing their own moral views on their patients. The patient's priest, minister, or rabbi, if he or she has one, should clearly be, consulted if there are major moral questions about the person's care, for then the patient can make such decisions with the help of the expert in the vision of life he or she has chosen.
Nurses and physicians must at least be aware of this dimension of life in helping cancer patients, as the medical decisions that must be made are not simply a function of the physical realities of what is possible and what is pragmatically most effective. When one has a serious disease like cancer, the choices regarding appropriate patient care also entail the patient's understanding of how people ought to live and die. The patient's conception may be radically different from that of the attending health-care professionals. For that matter, the latter may differ among themselves on such issues. They therefore should certainly not assume that the patient would choose what they would choose, as their moral values might be different.
That, however, does not mean that nurses and physicians should be totally silent about these matters. They should indicate that they are keenly aware of the value issues inherent in many of the decisions that must be made, and they should encourage the patient to think them through with appropriate family, friends, and clergy.
Health-care professionals, of course, are also people with moral convictions. If some forms of potential therapy violate their own values, they must let the patient know that, too. Assuming that the therapy in question is legal, even if it is morally controversial, the objecting physicians or nurses must also assure the patient that they will refer him or her to other health-care professionals who find it morally permissible to carry out the course of therapy the patient wants. This, too, is part of what it means to attend to the patient's spiritual well-being.
If variation is the name of the game with regard to moral questions, that is all the more the case when it comes to the broad matters of context generally treated by religion. As a result, family, friends, and clergy are certainly the ones appropriately and primarily responsible for this kind of spiritual care.
Nevertheless, here, too, nurses and physicians have a role to play. They can, at the very least, make sure that the patient has someone appropriate with whom to talk about these issues. They might mention, for example, the patient's need to talk about these matters when members of the family or friends visit, or they might call the clergy member with whom the person is most familiar to alert him or her of the patient's need to talk about these issues. They might also call the relevant hospital chaplain for such discussions. This is especially important for those patients who are not visited very often, for then their loneliness compounds their spiritual needs on all three levels.
Those health-care professionals who feel comfortable with religion and spirituality may even broach the issues themselves. The goal, of course, would not be to impose one's own ideas on the patient, but rather to get the patient to voice his or her spiritual needs and questions, and perhaps even to share some of one's own search. In general, asking the patient questions is a better method than making declarative statements, for through the questions the nurse or physician is validating the patient's spiritual needs without skewing them towards their own ideas and values.
The Jewish tradition, my own and the one I know best, has a most appreciative understanding of the role of health-care givers, one which depicts their role not only in terms of the obligation to heal the person's physical being, but also in broader, more spiritual terms. Along with one's parents, God is one of the progenitors of each one of us, and God continues to own our bodies through- out our lifetime. Therefore, Jews may not live in a town where there are no physicians, for that would be to put God's property at undue risk. On the other hand, those who tend to the sick, the Talmud says, are God's partners in the ongoing act of creation.
While nurses and physicians come from many religious backgrounds, just as patients do, all, I think, can acquire a much better view of themselves if they begin to think in such religious terms. The patient is not just a machine, and caregivers are not just mechanics. Both are human beings created in the image of God, and both are performing divinely ordained acts in seeking and affording medical care.