“… And I Will Give You Rest”: Addressing Spiritual Concerns of Dying Patients
by Daniel Fox
“I’m ready to meet Jesus!” There was enough conviction behind the statement that I believed her.
She looked tired and quite frankly, she had a right to be. Ms. Tibbs* was 94 and in poor health. Her eyes were sunken and brow was furrowed as I sat next to her in bay 21 of the emergency department. The prim and proper demeanor of this “southern lady” stood in stark contrast to the nearly bald scalp adorning her head and the hospital gown that gaped, exposing her entire backside. Her skin, previously clear and a deep caramel color, was now fragile and stained with nearly confluent ecchymoses. As I sat down next to her gurney and prepared to collect her medical history, I noticed the exaggerated tremor in her hands and the pronounced atrophy of her leg musculature- she no longer walked and had tremendous difficulty feeding herself. She was withering, becoming increasingly weak, slowly fading away. As she tried to answer my inquiries, she intermittently looked over and made eye contact as if to say, “You really don’t have to do this… I’m so tired… Really, it’s ok.”
Ms. Tibbs was dying- not of cancer or a heart attack or from a raging infection. She was dying because of… well… old age, decreased ambulation, dehydration, renal failure, lost will to live? It was difficult to say.
But for the physician in training, it is often this type of patient, the patient who is ready and even hoping to die, not the patient requesting all of medicine’s grand interventions, that makes us the most uncomfortable. We are inculcated with the notion that we should “optimize medical therapy” and “preserve life at all costs”. Persuasion to treat rather than palliation of suffering is our mantra. “Give me her labs, not her faith”, we think.
In the midst of the din that is modern medicine, there remains a quiet, constant pleading for medicine to do more, to think about the patients we treat in a more holistic manner. Holism is “taking all of someone’s physical, mental, social, and spiritual conditions into account” while treating their illness1. Though the definition seems simple enough, physicians in the modern era struggle to possess the empathy, knowledge, and perhaps most importantly, the time to devote to anything but the patient’s most pressing physical concerns. This is clearly insufficient.
There is an increasing body of literature devoted to “non-medical” or “spiritual care” patients and their families desire and in fact, need as they near the end of life2. Despite ambiguity in how spirituality is understood in health care settings the Institute of Medicine3, the National Hospice and Palliative Care Organization4, and the Joint Commission on Accreditation of Healthcare Organizations5 all advocate attention to the spiritual care of patients. In clinical settings, physicians6, nurses7, and other health care workers are being called upon to assume greater responsibility for addressing and meeting the spiritual needs of their patients, tasks that have been most recently assigned to pastoral care providers and clergy.
Although the physician’s role and responsibility appears to be growing in this arena, it is hardly a new challenge faced by physicians. Historically, the role of the physician has been one of end of life caretaker and a comfort for the families of the ill and aged. In fact, in many circumstances the physician was called in just to be present at the bedside when patients died. In an era without heroic therapies the measure of a good doctor was the willingness to simply “be” with dying and to comfort the living left behind.
Yet with developments in the last century of high acuity tertiary care and greater institutionalism of healthcare services in general, physicians’ participation in end of life care has dwindled from this once central responsibility. During this time a tension has developed between the empiricism of “evidence based medicine” and the more subjective “want” of patients and families to talk candidly regarding their spirituality and concerns about dying. The perception is that evidence based medicine demands Bayesian analysis and “statistically significant biomedical outcomes” to justify action within medicine. But the longing of patients and their families to have their spiritual needs addressed by their physicians during life’s waning remains for many of the patients we treat. A quote that captures this tension is revealed in a compendium on health and spirituality compiled by Puchalski, et al.
“I was offended by the way the media treated [a study of the influence of religious support near the end of life]… ‘There’s no difference in survival outcome and all people died.’ Survival?! Outcome?!...What about the lives of these [patients]? What if they were happier toward the ends of their lives? What if they coped better?”8
Indeed, there is a subset of issues within the confines of medicine that are not equivocally and definitively answered with a properly designed study.
A recent study published by Dr. Timothy Daalemann, et al. reported that 87% of patients in long-term care facilities received assistance with their spiritual needs as they approached the end of life9. Furthermore, families of patients receiving spiritual care and counseling reported a statistically significant improved experience through the convalescent and dying process compared with those for whom these services were not available. These results corroborate previous data from similar studies 10,11. Taken together, this suggests that we physicians, if we are to provide optimal care to our patients as they approach life’s passing, must learn to effectively address and discuss the roles of spirituality and faith with our patients. This is non-negotiable and the failure to do so will alienate modern physicians from the very intent of Hippocrates’ vow.
Following our initial meeting in the emergency department, Ms. Tibbs was admitted to our service, at her family’s behest, for further evaluation of her progressing weakness and fatigue. “I’m tired… I wanna go home… I’m ready to meet Jesus!”, she would softly say when I greeted her each morning prior to rounds. Over the course of her stay we performed three or four tests and drew daily labs, but discovered no acute illness of note. On the morning of her death, ironically the morning she was to “go home” from the hospital, I found her in bed, eyes closed, reciting a bible scripture embedded in her mind likely since childhood…
“…Come unto me, all ye that labor and are heavy laden, and I will give you rest…I am meek and lowly in heart… and ye shall find rest unto your souls…”12
Within the half hour, Ms Tibbs was dead. She had the “rest” she so earnestly desired. And although we had given all the appropriate medications and ordered reasonable tests, I could not help but feel disturbed that perhaps the need she cared most about was not met. No one ever talked directly and explicitly with her about her spiritual convictions, religious beliefs, or the fears she had when she contemplated dying. We did not listen to her repeated desires to “meet Jesus” and ignored the reasons why she quoted her sacred teachings.
We, the physicians and caretakers of our patients, live vicariously through them. And just as life-enhancing and life-saving interventions provide us with joy, we feel the fear and uncertainty that dying brings. It is these moments when our role as physicians must expand to take on a more holistic approach. Addressing the faith and spiritual expectations of our patients must not continue to be thought of as a “soft” afterthought of empirical patient care. Instead, let us return to the bedside to listen to and support our patients as they physically, emotionally, and spiritually prepare to die.
*Name changed to protect patient’s personal health information
1. Encarta Dictionary: North America. http://encarta.msn.com/dictionary_/holism.html Accessed March 2008
2. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. J Am Med Assoc. 2000;284:2476 –2482.
3. Field MJ, Cassel CK. Approaching Death. Washington, DC: National Academy Press; 1997.
4. National Hospice and Palliative Care Organization. Available at: http://www.nhpco.org/i4a/pages/index.cfm?pageid_3253&openpage_3253#About. Accessed March, 2008
5. Joint Commission on Accreditation of Healthcare Organizations. Spiritual assessment. Available at: http://www.jointcommission.org/AccreditationPrograms/LongTermCare/. Accessed March, 2008.
6. Lo B, Ruston D, Kates LW, et al. Discussing religious and spiritual issues at the end of life. J Am Med Assoc. 2002;287:749 –754.
7. Fehring RJ, Miller JF, Shaw C. Spiritual well-being, religiosity, hope, depression, and other mood states in elderly people coping with cancer. Oncol Nurs Forum. 1997;24:663– 671.
8. Puchalski C. Compendium of Outstanding Medical School Curricula. Washington, DC, George Washington Institute for Spirituality andbHealth.
9. Daaleman TP, Williams CS, Hamilton VL, Zimmerman S. Spiritual Care at the End of Life in Long-Term Care. Medical Care. Jan 2008:46:85-91.
10. Curlin FA, Roach C, Gorawara-Bhat R, Lantos JD, Chin MH. How Are Religion and Spirituality Related to Health? A Study of Physicians’ Perspectives. Southern Medical Journal. Aug 2005:98:8:761-766.
11. Teno JM, Clarridge BR, et al. Family Perspectives on End-of-Life Care at the Last Place of Care. Journal of the American Medical Asscn. Jan 2004:291:1:88-93.
12. New King James Bible, 1901. Matthew 11:28-29