© Springer International Publishing Switzerland 2015
Barbara G. Jericho (ed.)Ethical Issues in Anesthesiology and Surgery10.1007/978-3-319-15949-2_1515. End-of-Life Issues: Spirituality
(1)
Center for Bioethics and Medical Humanities, Medical College of Wisconsin, 8701 Watertown Plank Road, Milwaukee, WI 53226, USA
Abstract
There is an increasing emphasis in medicine for healthcare providers to treat the whole patient. Whole patient care includes the physical, psychosocial and spiritual care of the patient. Contemporary medicine has focused on the physical illnesses of the patient, creating a large armamentarium of tools to combat disease processes. In addition, addressing the spiritual needs of critically ill patients is an important part of intensive care, particularly when the patients are dying in the hospital. This chapter will describe some differences between spirituality and religiosity, suggest some self-education tactics for physicians interested in expanding their understanding of spirituality and discuss approaches to some common requests of a spiritual nature in the intensive care unit (ICU).
Keywords
End-of-LifeSpiritualityReligionEthicsPrayerCase Presentation
A 71-year-old man is in your intensive care unit (ICU). He was admitted with altered mental status, hypotension and sepsis due to his widely metastatic cancer. His daughter, his power of attorney for healthcare asked that he receive all possible medical interventions. He was intubated, started on pressor support as well as antibiotics. He has not improved in the last 5 days. His oncologist told the daughter and you that there are no more curative or palliative options available for him. He remains septic and you believe he is going to die soon. You have kept his daughter informed of his condition and you had another conversation with her about his impending death. She expressed her appreciation for your care of her father. She understands he is terminal; she is resigned to his death. She tells you that she and her father are of the same religion. She asks you to be present when she and the chaplain recite the customary prayers said for a dying person of their faith tradition. You have relayed this request to the chaplain assigned to the ICU. This chaplain states that it would be inappropriate to perform these prayers because the chaplain and the patient have had many pleasant conversations over the course of his chemotherapy during which the patient made it abundantly clear that he had forsaken his religious upbringing and does not want to receive any of the traditional rites of passage. What are your next steps? What are you going to tell the daughter?
Introduction
As has been said innumerable times, medicine is both an art and a science. If the direction of medicine in the last 100 years is examined, there has been a distinct scientific turn. This science has helped many live. With the discovery of anesthetics, vaccinations, antibiotics and the application of aseptic techniques, many lives have been saved. Since World War II there have been extraordinary advances in the scientific aspects of medical care. Many acute diseases are now reliably cured and there is always great interest in the next discovery that will enhance health. With this emphasis on the latest scientific discovery, there has been neglect of the art of medicine. The art of medicine includes creating and maintaining a healing relationship that sustains the patient throughout the course of the illness. In spite of scientific advances, patients still die and the last days of their lives can best be served by the art of medicine rather than the science of medicine.
There have been three trends in the last 15 years that are reshaping the approach to care of the critically ill patient. First, Rothman described a recent paradox [1]. More Americans are dying at home, as they would like, but if they die in a hospital, it is more likely to be in an ICU. Secondly, as Aslakson [2] and Cook and Rocker [3] have suggested, palliative care is an increasingly accepted part of the care of the ICU patient. The intensivist who may be more focused on helping those patients who still have a chance to survive the ICU frequently welcomes the communication skills as well as the symptom management expertise of the palliative care specialist. The third trend is the increasing emphasis on having healthcare teams treat the whole patient. The whole patient concept includes seeking to understand the medical, psychosocial, spiritual and religious concerns of the patient. This renewed interest in the spiritual and religious concerns of the patient is especially relevant as a patient nears death. Further, the Joint Commission expects a spiritual assessment of patients to be performed and has suggested some questions to ask [4]. Guidelines from the American College of Critical Care Medicine Task Force state that “all members of the interdisciplinary team need to recognize the impact of spirituality on the patient/family ICU experience, especially with regard to matters of faith at the end of life” [5]. The Task Force supports training “ICU clinicians to incorporate spiritual care of the patient and family into clinical practice” [5]. This is “an important step in addressing the goal of care for the whole person” [5].
When it is accepted that a patient is dying in the ICU, the patient and family may continue to seek the assistance of the intensivist. The intensivist’s role changes from preventing death to enabling the best possible death. Knowledge of the patient’s religious background is important since decisions about continuing aggressive care in the face of the medical likelihood of death are frequently based on an understanding of religious teachings [6]. These teaching may encourage the patient or family to insist on care that does not, according to the physician, appear to provide a benefit or prolongs the suffering and death of the patient. It is reasonable for the physician to become familiar with the most commonly encountered perspectives. There are many articles describing the different religious perspectives on end-of-life care [7–12]. Physicians should use the information in these and other articles as guides since many patients do not practice their faith in complete accordance with the tradition. Thus when discussing critical decisions, the physician should inquire about the particular patient’s perception on end-of-life care.
Impending death causes many patients to wonder about their lives, what kind of impact they have had on others, as well as what happens during and after death. Some patients express interest in seeking reconciliation with those they believe to have harmed as well as helping their families cope with their death. Patients usually continue with the tradition that has given meaning to them during their lives. They may return to the religion of their youth, if they have moved away from formal religious practices. Physician knowledge of these traditions may ease the patient’s transition from life to death and may enable better family acceptance of the death.
In the ICU, as the intensivist begins to accept the inevitability of a patient’s death, the intensivist may wish to maintain his or her scientific role, devote his or her limited time to those patients he or she believes will live and increase the role of the palliative care team. This may be the result of the intensivist’s own discomfort with failing to prevent the death of the patient. On the other hand, the intensivist can work with the patient and family to create a better death, which is in keeping with the whole patient model of care. In the ICU, the family is frequently the voice of the patient and, as the patient is dying, the family needs to receive care as well. This care will likely involve conversations about the spiritual and religious practices of the patient as understood by the family. Although this is not traditional medical therapeutics as conceived in the latter half of the twentieth century, this care reinforces the role of physician as healer.
Spirituality and Religion
When asked, most Americans consider themselves spiritual, if not religious. There is no universal definition of spirituality. In general, spirituality is “that which allows a person to experience transcendent meaning in life. This is often expressed as a relationship with God, but it can also be about nature, art, music, family or community – whatever beliefs and values give a person a sense of meaning and purpose in life” [13]. Patients who are facing their death may start to review their life, seeking meaning without reference to a religious tradition. This is a spiritual approach. A religious approach would be more oriented toward a life review in relation to the tenets of the patient’s faith tradition. Religion may be defined as a shared understanding of the transcendent by a community of members. Religions attempt to organize and clarify the world, both seen and unseen. Religions give guidance on how to live one’s life which includes how to relate to other human beings as well as how to relate to the transcendent. And of course, religions provide guidance on how to die.
Both religion and medicine are tools to enhance human flourishing. Spirituality is concerned with the thoughts and activities that enhance the person’s flourishing. Like religions, medicine also tries to organize and explain the world, however medicine is oriented toward explaining the natural world, leaving out the transcendent. Medicine works to manipulate the natural world to enable better health. Medicine is not always able to prevent worsening health, and as a patient begins to die, spirituality may enhance the patient’s sense of well-being and understanding of the events that are in progress more than further medical interventions. Medicine as a completely separate entity from spirituality is a relatively recent idea – it has come to prominence in the last 150 years or so. As Sulmasy [14], Groopman [15] and Richardson [16] have reminded us, there was a time when the priests were also the physicians, thus able to provide both physical and transcendent comfort during the dying process. Whole patient care suggests that (to paraphrase Hippocrates) when physician efforts to cure a patient are not possible via scientific medicine, then physicians continue to care for the patient in the form of spiritual support.
Pesut [17] describes three approaches to spirituality, making it clear that there is not a unifying definition but rather some common themes. Reading and evaluating multiple definitions of spirituality enables a physician to explore how he or she might best be able serve the whole patient meaningfully when encouraging the patient to talk about spirituality. Puchalski and Romer [13] support the taking of a spiritual history in order to know the patient more fully. As a patient nears the end of life, a spiritual assessment may be of benefit to both the patient and the physician. Taking the inventory signals that the physician understands the importance of spiritual issues. The patient’s answers will help the patient review the lived life, more fully understand the impending death and perhaps uncover one or two more undertakings that the patient might accomplish before death.
With the increased emphasis on treating the whole patient, it is reasonable for the physician to start a dialogue about patient or family concerns. Asking about the spiritual concerns of the dying patient as well as concerns of family members with an offer of continued chaplain conversation as soon as the physician is out of his or her comfort zone reinforces the continued commitment to patient care.
If there are explicit questions about a particular faith tradition with which the physician is not familiar, a gentle statement that the physician is unable to supply a religiously specific answer is best. An offer of chaplaincy assistance or communication with the patient’s personal religious leader should immediately follow the explanation. This explanation and offer can prevent an interpretation of discounting the faith concerns of the patient.
Preparation for Addressing Spiritual Concerns
Discussions with the patient and family about spirituality may be anxiety provoking for the physician who finds himself or herself to be the least knowledgeable person in the conversation. This lack of knowledge can be uncomfortable for the physician who is accustomed to leading conversations, demonstrating expertise about the medical aspects of disease processes. Being a team member (along with the patient, family, chaplains, nurses and social workers) as opposed to team leader may be a new experience for the physician. For conversation about spiritual issues to have value and meaning for the patient and family, it is necessary to learn about spiritual concerns at the end of life. Starting a discussion of spirituality will be appreciated by the patient; however, the physician must remain sensitive to the patient who does not wish to talk or prefers to talk with personal clergy.
Chaplains as Resources
When the physician decides to expand his or her support of the patient to include spiritual concerns, engaging the services of the chaplain is essential. Seeking support from the chaplain is necessary to prevent the perception of an attempt to take over the chaplaincy program. Discussions will help the physician discern what the chaplains believe would be the best use of the physician’s time, the most effective communication route with the chaplains and common pitfalls encountered when helping the patient and family with their spiritual concerns. Chaplains can describe the most common religious traditions of the hospital patient population and direct the physician to local clergy who can expand the physician’s knowledge base. The physician might shadow a chaplain initially and then ask the chaplain to observe the physician’s interactions a few times, providing suggestions to improve the physician’s skills. Chaplains must be informed of the physician’s intentions so that when the physician reaches the limits of his or her abilities to help, the chaplain can reasonably seamlessly continue to provide support. Finally, the chaplains will also be able to recommend conferences, books, videos and other resources that the physician would find useful as the spiritual education process continues.
As the physician becomes increasingly comfortable engaging in spiritual conversations with the patient and family, the physician may wish to pursue further self-education. Todres, Catlin and Thiel describe a pastoral care program developed to train intensivists about spiritual distress [18]. While this program is rather unique, an interested intensivist could research local clinical pastoral educational opportunities. Undertaking a formal course of study may be more than the physician wishes to do; however, learning opportunities can be sought out, with perhaps weekend or weeklong conferences focusing on one or two aspects of spiritual care. Internet searches can elicit conferences to attend, online lectures as well as high quality readings to enhance the understanding of both spirituality and religion.
Self-Examination
As with so many other issues, an initial step would be an inventory of personal attitudes and beliefs about spirituality. The fundamental question is whether or not the physician believes it is appropriate to participate in the spiritual care of the patient. If the sincere answer is no, then the physician ought to craft a respectfully worded statement to that effect to be delivered to the patient and family should they ask for help. Along with the statement, the physician should offer to contact the hospital chaplains for assistance.
If the physician deems it reasonable to participate in the spiritual care of the patient, there are many questions to be considered. What level of participation is appropriate? What are the physician’s personal definitions of spirituality and religion? If the physician has a faith tradition, how well does the physician understand it? How comfortable is the physician listening to the spiritual concerns of the dying patient? How comfortable is the physician listening to religious tenets that are either different from or in conflict with those of the physician? What is the appropriate response of the physician to this kind of conflict? Thorough evaluation of honest answers to these questions will direct next steps in the education process and also define limits of the physician’s involvement in spiritual care.
Spiritual Assessment Tools
Before delving into the spiritual care of the patient, the physician should examine some current spiritual assessment tools. Saguil and Phelps identify three tools, FICA, HOPE and Open Invite [19]. Each of these contains a few questions that the physician can answer for himself or herself in order to determine which tool is most suited to his or her personal style of practice. Sulmasy suggests establishing an “empathic connection” before engaging in a spiritual assessment [20]. A patient may self-identify as both spiritual and religious and the physician can elect to focus on the spiritual, while simultaneously offering to contact appropriate chaplains or the patient’s personal religious advisor for further religious interactions. Fitchett describes different levels of spiritual participation and suggests that it would be reasonable for a physician to do an initial spiritual screening and perhaps start the spiritual history taking, leaving the in depth spiritual assessment to the chaplain services [21]. In patient interviews, Yardley et al. noted that “[t]here was an expectation that any healthcare professional could deal with initial care to meet spiritual needs” and “no participant felt they would mind being asked questions about spirituality” [22]. If these questions are asked in an open and attentive manner, patients will most likely appreciate the asking. The patient should also be made to feel that it is completely acceptable to refuse such inquiries.
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Informed Consent and the Disclosure of Surgeon Experience
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