Best Practice
Care of dying patients: beyond symptom management ".. .the secret of the care ofthe patient is in caring for the patient." -Francis Weld Peabody, 1927
INTRODUCTION Although many people have an ideal vision of deaththey die at home, comfortable, surrounded by loved ones-the majority of Americans still die in the hospital, in pain, with their wishes unheeded by their physicians.1 2 Physicians have a critical role to play in helping patients achieve the kind of death they want. In a study by Hanson,3 family members ofpatients who had died identified ways to improve end-of-life care. Notably, they wanted to talk to physicians about death and dying, including treatment options and alternatives, prognosis, advance directives, and death. Patients and families wanted psychosocial support, particularly access to the physician, through this difficult and important time. Although symptom management is a crucial first step identified bydying patients and their families, this article focuses on care beyond symptom control. It begins with a review of communication with dying patients and psychosocial support. Next, it covers hospice, an underused service that can provide many of the services that patients and families want at the end of life. The last section examines what physicians can do for families and themselves after a patient dies to help deal with the grief and loss.
COMMUNICATING ABOUT ILLNESS AND DEATH One fundamental part ofcaring for dying patients is communicating about illness and death (see box). The best data regarding communication about illness and death are those regarding advance directives, perhaps because advance directives are concrete, well defined, and easy to study. We can extrapolate important lessons for the care of dying patients from studies of advance directives.
* * * * * * *
Listen Make empathic statements Avoid jargon Elicit the patient's values and goals of care Offer information about prognosis Discuss death explicitly Maintain cultural sensitivity
Many physicians are reluctant to talk to patients about death for fear of upsetting them or taking away hope.
Steven Z. Pantilat Program in Medical
Ethics Division of General Intemal Medicine Department of Medicine University of
* Physicians can improve their care of dying patients. * Physicians can improve their communication about illness and death by listening more than speaking, avoiding jargon, encouraging patients to share their values and goals of care, and making empathic connections with patients. * Physicians must offer psychosocial support, including making specific statements to a patient indicating that the physician will not abandon him or her, discussing hope, helping patients to attend to important relationships, and encouraging spirituality. * Hospice is an invaluable and underused resource for providing high-quality, compassionate care to dying patients and their families. * Physicians must attend to the impact of a patient's death on the family and on themselves.
California at San Francsco San Francisco, CA 94143
Correspondence to:
[email protected] Competing interests: none
Despite these concerns, McCormick and Conley found that dying patients wanted to talk about illness and death.4 Other studies demonstrate that a majority of patients want to talk about advance directives.5 6 Despite this desire, few patients had spoken with their physicians about advance directives because theywere waiting for the physician to raise the issue. Even when these discussions do occur, they are far from ideal. Tulsky et al., in a review of tape recordings of medicine residents discussing code status with hospitalized patients, found that in the average 10-minute conversation, the physicians used jargon, talked nearly 75% of the time, missed opportunities for empathic connection, and did not elicit the patient's values and goals of care or offer information about prognosis.7 Based on these findings, physicians can take steps to improve communication with dying patients. First, physicians can listen more. Although there is important information for physicians to share, physicians must encourage the patient to talk and then listen to their concerns. Physicians should refrain from using jargon. In addition, rather than focusing on specific decisions such as instituting vasopressors or dialysis, physicians may find it more helpful to elicit the patient's general values and goals to give a context for care and interventions. One way to elicit this information is to ask, "When you think about getting very sick, what worries you the most?" Similarly, asking the patient to identify a surrogate decision maker is critical for preparing for the time when the patient may not be able to make decisions on his own behalf. Beginning such conversations by eliciting the patient's choice of a surrogate offers a less threatening Volume 171 October 1999 WJm 253
Best Practice
might say, "I have information about your condition. Some patients want to know the details and some prefer not to know or to have me talk to a family member. How do you feel?" Such a statement respects the patient's cultural beliefs and allows the patient to waive his right to information while not assuming that he will.
PSYCHOSOCIAL SUPPORT "Not every patient can be saved, but his illness may be eased by the way the doctor responds to him.... He has little to lose and everything to gain by letting the sick man into his heart. If he does, they can share, as few others can, the wonder, terror and exaltation of being on the edge of being." -Anatole Broyard"
way to initiate the discussion. One way to elicit the patient's choice of a surrogate is to ask, "If you were so sick that you could not talk to me directly, who should I talk with to help me make decisions about your care?" Physicians should be alert to opportunities for empathetic connection. Empathic statements not only encourage patients to share more of their concerns but also express physicians' care for their patients. Patients also need explicit information about prognosis for decision making. Studies have shown that elderly patients are overly optimistic about chances for survival after CPR and, when their misperceptions were corrected, they were less likely to want CPR.8'9 McCormick and Conley found that dying patients said they had to infer prognosis from comments and nonverbal communication from doctors and nurses and would have preferred straight talk.4 Information about prognosis allows patients to make plans and attend to tasks such as seeing family, having visitors, or writing wills. McCormick and Conley also learned that patients wanted to discuss death explicitly. Such discussions help define the patient's unique view ofa good death. They elicit the patient's fears and concerns about death and allow the physician to address them directly. One way to elicit this information is to say, "Many patients with this condition tell me they think about the possibility of dying. They have questions about this. How about you?" Finally, these discussions must respect the patient's cultural background and be sensitive to differing notions about the implications of discussing death and dying. For instance, in Navajo culture it is believed that giving a patient an explicit prognosis will cause the prediction to come true.'0 One way to raise the issue of prognosis while allowing the patient to refuse the information is to allow the patient to give "informed refusal." A physician 254 wJm Volume 171 October 1999
Traditionally, support was all that physicians could offer patients. With advances in medical technology, many physicians downplay the fact that such support can be critical to the care of dying patients. In communicating about illness and death, we offer patients information, yet information without support can be distressing. In a study of HIV-positive patients, Chesney et al. showed that patients offered only information about HIV were more distressed than patients offered information and psychosocial support."2
Joseph's medicine
Quill and Cassel write about nonabandonment and the importance of being with the patient throughout the course of illness.'3 Specific statements such as, "I will be your doctor throughout this illness," and "I will take care of you, whatever happens," can do a great deal to relieve anxiety and reassure patients that they will not be abandoned by their doctor when they need him or her the most.
Best Practice
Ultimately, patients abandon physicians when they die. In response, physicians may withdraw from patients before they die. Physicians start looking ahead too early and pull away so they are not hurt when their patients die, because they incorrectly conclude there is nothing more they can do, or because they have difficulty dealing with death and facing their own mortality. It is critical, however, for the physician to be with the patient through the dying process. There are several ways for physicians to make sure they don't abandon their patients. First, physicians can provide dying patients with access. A physician who gives a patient a beeper number or direct phone number and who makes home visits and phone calls makes a powerful and meaningful statement about commitment to the patient. In addition, scheduling office visits can be very important to dying patients. Although such a visit may be too burdensome for some patients, many dying patients want to come to see the doctor. There is power in presence. For patients who are too ill to visit the doctor, a home visit can be critical in managing the illness and making the patient feel cared for. Hope is another important component of support. Many people fear that talking about dying will rob patients of hope. As physicians, we do not create hope or take hope away. We can, however, encourage and uncover hope for patients. A simple way to help patients identify hope is to ask, "When you think about the future, what do you hope for?" Patients often give humbling and profound responses like, "I hope to die at home," or "I hope to live to see the birth of my grandchild." Such statements offer insights into a patient's values and goals and create opportunities to encourage hope. Increasingly, death is seen as a stage of growth and development in which people have tasks to complete. Ira Byock writes that there are five statements each person needs to make before dying: "Forgive me," "I forgive you," "Thankyou," "I love you," and "Goodbye."14 The process of making these statements brings closure and attends to important personal relationships. Another part of growth and development at the end oflife involves patients telling their life stories. For many people the existential angst at the end of life is not about dying but about never having lived. People fear being forgotten. Telling their stories is a way of being remembered by loved ones and of bringing further closure. Physicians can encourage patients to use a tape recorder, journal, dictation, or videotape to tell the stories of their lives to be shared by loved ones in the future. Finally, the role of spirituality has been gaining more and more attention in the care of dying patients and in medicine generally. There is evidence that dying patients who are spiritual or religious have less anxiety.15 Although this fact does not suggest that physicians should tell patients to become religious, it does support physicians' encour-
Joseph laughing, NYC 1995
agement ofspirituality in patients already inclined that way. In addition, spirituality can offer dying patients comfort and meaning. Although physicians may have no specific religious or spiritual training, many of the issues patients raise with physicians have a spiritual dimension. Questions such as "Why is this happening to me?" have a decidedly spiritual quality. When a physician discusses spirituality, it may help legitimize the issue for the patient. There are several ways to raise the issue of spirituality (see box).
"From where do you draw your strength?" "What role does religion or spirituality play in your life?" "Do you believe in a God or higher power?" "Do you pray?" "Do you attend a synagogue or church?"
HOSPICE It is important to realize that physicians cannot provide all of the services and support that are needed to care for dying patients. The best end-of-life care occurs when there is a team ofproviders caring for the patient. Nurses, social
workers, pharmacists, chaplains, physical therapists, and psychologists, among other members of the healthcare team, play a critical role in providing comprehensive, compassionate care at the end oflife. One way to marshal this type of multidisciplinary support is through hospice. Hospice focuses on palliation of symptoms and communication about illness and death. It provides psychosocial support to patients and their families. The only randomized control trial of hospice showed that, compared with usual care, hospice increased patient satisfaction and decreased family anxiety.16 Volume 171 October 1999 wlm 255
Best Practice
Despite the usefulness of hospice, it is underutilized. The average length of stay in hospice is only 36 days, although under the Medicare hospice benefit, physicians need to certify only a six-month prognosis for patients to qualify.17 Even more troubling is that 15% of patients die within 7 days of admission to hospice. Such patients could have reaped more benefit from hospice. Unfortunately, too few patients afford themselves of hospice, and most of those who do, come to it late. Physicians may be reluctant to talk about hospice for fear oftaking away hope. Nonetheless, there are ways to raise the issue ofhospice that are less threatening to patients (see box).
"Something discuss with all my patients with cancer is hospice. Have you heard of hospice?" "Hospice may not be right for you now, but wanted you to hear about it so you know all the options. It may be right for you later." "It sounds like what concerns you the most is trying to get your wife [or husband] more help at home as you get sicker. One way to provide more support for both of you is through hospice."
AFTER DEATH The work ofthe physician does not end when the patient dies. In many instances, the family also becomes our patient and must be attended to after the patient has died.
Caring for families It is important to attend to the family and provide comfort and support. One important step is to call the family several weeks after the patient has died. Besides showing respect and caring, such calls allow families to ask questions about the death. Without such an opportunity, many families may wonder and carry guilt for years about whether there was something that could have been done differently. Many physicians choose to send condolence cards to express caring for the family, acknowledge their loss, and relate how much the patient meant to him or her. In addition, attending the funeral or memorial service can give the physician dosure and can mean a great deal to the family. Finally, some physicians may contact the family on the anniversary of the patient's death. Hospices do so routinely, in addition to providing psychosocial support for a year after the patient's death.
Support for physicians Physicians and staff caring for dying patients also need support. Physicians often have the luxury of being able to write an order to withdraw life-sustaining interventions and walk away, leaving the nurse and respiratory therapist alone with a dying patient. At such moments, the 256 wIm Volume 171 October 1999
physician's presence can be crucial to patients for managing unexpected distress or discomfort. The physician's presence can also be supportive to staffand emphasizes the team approach to patient care. Rituals can help acknowledge and deal with death. Some physicians use prayer, meditation, time alone, journal entries, or a quiet walk to acknowledge and contemplate a patient's death. In addition, discussing patients and circumstances oftheir death with colleagues helps to deal with sadness. Although it may be difficult to talk about a patient's death, not talking about it can take a cumulative toll on a career in medicine. CONCLUSION Physicians can help their patients and themselves find comfort and meaning at the end oflife and help transform a difficult period into a time of meaning and connection. Acknowledgments: I thank Robert Brody and Stephen McPhee for teaching me so much ofthe content ofthis paper and for manuscript review, and Emily Greenstein for preparing and reviewing this manuscript.
Dr. Pantilat is a Faculty Scholar ofthe Open Society Institute's Project on Death in America. References
1 Field MJ, Cassell CK Approaching death: improving care at the end oflife. Washington, DC: National Academy Press; 1997; p. 437. 2 The SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591-1598. 3 Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care? Opinions ofbereaved inily members. J Am Geriatr Soc 1997;45:1339-1344. 4 McCormick TR, Conley BJ. Patients' perspectives on dying and on the care of dying patients. WestJ Med 1995;163:236-243. 5 Emanuel LL, Barry MJ, Stoeckle JD, Ettelson LM, Emanuel EJ. Advance directives for medical care-a case for greater use. N Engo J Med 1991;324:889-895. 6 Lo B, McLeod GA, Saika G. Patient attitudes to discussing lifesustaining treatment. Arch Intern Med 1986;146:1613-1615. 7 Tulsky JA, Chesney MA, Lo B. How do medical residents discuss resuscitation with patients? J Gen Intern Med 1995;10:436-442. 8 Schonwetter RS. Care of the dying geriatric patient. Clin Geriatr Med 1996; 1 2:253-265. 9 Murphy DJ, Burrows D, Santilli S, et al. The influence of the probability of survival on patients' preferences regarding cardiopulmonary resuscitation. N Engl J Med 1994;330:545-549. 10 Carrese JA, Rhodes tA Western bioethics on the Navajo reservation. Benefit or harm? JAMA 1995;274:826-829. 11 Broyard A. Intoxicated by My Illness and Other Writings on Life and Death. Long Island (NY): Fawcett Books; 1992. 12 Chesney M, Folkman S, Chambers D. Coping effectiveness training for men hiving with HIV: prdeiminay findings. IntJ STD AIDS 1996;2:75-82. 13 Quill TE, Cassel CK. Nonabandonment: a central obligation for physicians. Ann Intern Med 1995;122:368-374. 14 Byock IR Beyond symptom management: growth and development at the end of life. In: Berry ZS, ed. Care of the Dying- What We Need to Know, What We Need to Teach, Society of General Internal Medicine Pre-meeting symposium. Washington, DC; 1996. 15 Kaczorowski JM. Spiritual well-being and anxiety in adults diagnosed with cancer. Hosp J 1989;5:105-1 16. 16 Kane RL, Wales J, Bemstein L, Leibowitz A, Kaplan S. A randomised controlled trial of hospice care. Lancet 1984; 1:890-894. 17 Christakis NA, Escarce JJ. Survival of Medicare patients after enrollment in hospice programs. N Engl J Med 1996;335:172-178.
