Spirituality and End of Life Care: A Time for Listening and for Caring Christina M. Puchalski, M.D. The George Washington Institute for Spirituality and Health (GWish) The George Washington University School of Medicine and Health Sciences Washington, D.C. © Christina Puchalski MD

Life Expectancy 1900: 50 years 1995: 75.8 years Christina Puchalski MD

Causes of Death 1900 1. Influenza 2. Tuberculosis 3. Diphtheria 4. Heart Disease 5. Cancer 6. Stroke Christina Puchalski MD

Causes of Death 1995 1. Heart disease 2. Cancer 3. Stroke Christina Puchalski MD

Where People Die 1900: at home 1992: 57% in hospitals 37% in nursing homes 6% in residence Christina Puchalski MD

Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments ------------------------------------------SUPPORT--------------------------------------------- JAMA 1995; 274:20 1591-1598 Christina Puchalski MD

SUPPORT • When patients had a clear preference for DNR, their physicians did not know it. • In many cases when the physician knew their patients preference, it was not followed. • 50% of patients had moderate to severe pain at least half the time within their last few days in the hospital. • Most patients wanted to die at home: all died in the hospital. Christina Puchalski MD

Conclusions • Although the SUPPORT intervention failed, we can do better • Advance directives aren’t necessarily the solution • Improving communication and understanding are keys to improving care for dying patients • We need quality improvement projects directed at quality of care for seriously ill and dying patients (e.g. pain control) Christina Puchalski MD

ABIM Survey, 1998 85% of medical residents surveyed reported being very uncomfortable with talking to patients about dying and about their patients wishes as the end of life. Christina Puchalski MD

New More Compassionate Model of Care Focus on The Whole Person • Physical • Emotional • Social • Spiritual Christina Puchalski MD

MSOP Report 1, Association of American Medical Colleges, 1998 Physicians must be compassionate and empathetic in caring for patients… In all of their interactions with patients they must seek to understand the meaning of the patients’ stories in the context of the patients’ beliefs and family and cultural values… They must continue to care for dying patients even when disease-specific therapy is no longer available or desired. MSOP Report 1, Association of American Medical Colleges, 1998 Christina Puchalski MD

Joint Commission on Accreditation of Health Care Organizations (JCAHO) Pastoral counseling and other spiritual services are often an integral part of the patient’s daily life. When requested the hospital provides, or provides for, pastoral counseling services. Christina Puchalski MD

American College of Physicians End-of-Life Consensus Panel, 1998 Physicians should extend their care for those with serious medical illness by attentiveness to psychosocial, existential, or spiritual suffering. American College of Physicians End-of-Life Consensus Panel, 1998 Christina Puchalski MD

Initiative in Improving End-of-Life Care • Last Acts Campaign, Robert Wood Johnson Foundation • EPEC, American Medical Association • John Templeton Foundation and GWish Awards on Curricula in Spirituality and Medicine • IHI collaborative on Improving Care at The End of Life Christina Puchalski MD

What the Research Shows Christina Puchalski MD

The overarching message that emerges from this study is that the American people want to reclaim and reassert the spiritual dimension in dying. George H Gallup, 1997 Christina Puchalski MD

Dying patients have less death anxiety than healthy patients Dying patients have less death anxiety than healthy patients. Religious meaning and the strength of ones religious beliefs play an important role in one’s not being afraid to die. Gibbs, H.W., Achterberg-Lawiis, J. J. “Spiritual Values and Death Anxiety: Implications for Counseling with Terminal Cancer Patients.” Journal of Counseling Psychology (1970) 25(6): 563. Christina Puchalski MD

Gallup Survey Key Findings Finding Comfort in Their Dying Days • Companionship • Spiritual Comfort “Spiritual Belief and the Dying Process: A Report on a National Survey,” 1997. Christina Puchalski MD

Gallup Surveys Key Findings, cont. Spiritual Concerns • Not being forgiven by someone for something you did • Not having a blessing from a family member or clergy person • What it will be like for you after you die George H. Gallup International Institute. “Spiritual Belief and the Dying Process: A Report on a National Survey,” 1997. Christina Puchalski MD

Gallup Surveys Key Findings, cont. Reassurances That Give Comfort • 89%: Believing that you will be in the loving presence of God or a higher power • 87%: Believing that death is not the end but a passage • 87%: Believing that part of you will live on through your children and descendants • 85%: Feeling that you are reconciled with those you have hurt or who have hurt you George H. Gallup International Institute. “Spiritual Belief and the Dying Process: A Report on a National Survey,” 1997. Christina Puchalski MD

Gallup Surveys Key Findings, cont. Reassurances That Give Comfort • 82%: Having given or received the blessings that are important to you • 76%: Believing that you have made your mark on the world • 55%: Knowing that ritual prayers will be performed for you George H. Gallup International Institute. “Spiritual Belief and the Dying Process: A Report on a National Survey,” 1997. Christina Puchalski MD

Research in Spirituality and Health Coping: Advanced Cancer • Patients in a hospice in Burlington, VT, were studied. Their spiritual beliefs were found to be positively correlated with: - increased life satisfaction - happiness - diminished pain Yates, Med Ped Onc, 1918; 9:121-128 Christina Puchalski MD

Research in Spirituality and Health Coping: Pain Questionnaire by Amer Pain Society to Hospitalized Patients • Personal Prayer most commonly used non-drug method for pain management: - Pain Pills 82% - Prayer 76% - Pain IV Med 66% - Pain Injections 62% - Relaxation 33% - Touch 19% - Massage 9% McNeill, JA et.al. J of Pain and Symptom Management, 1998; 16(1):29-40 Christina Puchalski MD

Research in Spirituality and Health Coping: Bereavement • Study of 145 parents of children who died of cancer: - 80% reported receiving comfort from their religious beliefs one year after their child’s death - Those parents had better physiologic and emotional adjustment - 40% of those parents reported strengthening of their own religious commitment over the course of the year prior to their child’s death Cook, J Sci Study of Religion, 1983; 22:222-238 Christina Puchalski MD

Research in Spirituality and Health Coping: Study of 108 Women Undergoing Treatment for GYN Cancers • When asked what helped them cope with their cancer, the patients answered: - 93%: spiritual beliefs - 75% noted their religion had a significant place in their lives - 49% became more spiritual after their diagnosis Roberts, JA et.al. American Journal of Obstetrics and Gynecology 1997; 176(1):166-172 Christina Puchalski MD

Research in Spirituality and Health Quality of Life • Existential domain: measures purpose, meaning in life and capacity for personal growth and self-transcendence: - Personal existence… meaningful - Achieving life goals… fulfillment - Life to point… worthwhile - These items correlate with good quality of life for patients with advanced disease Cohen, SR. Mount, BM et.al. Palliative Medicine 1995; 9:207-219 Christina Puchalski MD

Caregiver Stress and Spirituality Caregivers who felt close to God, prayed frequently, and believed religion to be important felt less stress and were better able to cope with caregiving demands. Ana Paula Cupertine APA, August 1998 Christina Puchalski MD

Caregiver Stress and Spirituality, cont. • Felt more useful and more confident • Found new meaning to their lives • Experienced strengthened relationships • Were more able to appreciate life Christina Puchalski MD

HIV+ Patients Who Were Also Religions Were: • Less likely to fear death • More likely to have discussions about resuscitation status Kaldjian, L.C. et.al. “End-of-Life Decisions in HIV-positive Patients: The Role of Spiritual Beliefs.” AIDS, 1998; 12(1): 103 Christina Puchalski MD

Spiritual Identifiers in Dying Patients • Is there purpose or value to their life? • Are they able to transcend their suffering? • Are they at peace with themselves and others? • Are they hopeful, or are they despairing? • What nourishes their personal sense of value: prayer, religious commitment, personal faith, relationship with others? • Do their beliefs help them cope with their anxiety about death and with their pain, and do they aid them in attaining peace? Christina Puchalski MD

Assessment of the Meeting of Spiritual Needs • Does the health care provider listen to their beliefs, faith, pain, hope or despair? • Are patients able to express their spirituality through prayer, art, writing, reflections, guided imagery, religious or spiritual reading, ritual, or connection to others of God? • Are referrals made to chaplains, counselors, or spiritual directors when appropriate? Christina Puchalski MD