End of Life

Overview

Spirituality is an integral part of dying. The dying, and those who care for them, frequently grapple with questions about who they are, why they are here, and why they are now leaving. Spiritual traditions can provide us with practices that guide us as we help the dying and their loved ones cope with grief, loss, and fear. Faith and the physician is an important consideration too. A doctor’s religious faith, or lack of faith, influences a patient’s end of life care, a 2010 study published in the Journal of Medical Ethics, has concluded. This section profiles the “Being with Dying” practices of Joan Halifax, a Buddhist teacher, Zen priest, Abbot, and Head Teacher at the Upaya Zen Center in Santa Fe New Mexico, who has been working in the area of death and dying for over 30 years. It also delves into some of the scientific research that focuses on the link between religion and spirituality and end of life issues.

The Science

• According to the Religion, Spirituality, and End of Life Care Module created for the Robert H. Lurie Comprehensive Care Center at Northwestern University Hospital, Recent polls conducted in the United States indicate that patients and families are requesting increased attention to the spiritual dimension of their lives by health care providers, especially at the end of life.
• A 1997 Gallup survey on Spiritual Beliefs and the Dying Process found that American medicine and clergy often fail to provide what dying patients seem to want most including support for the deeper spiritual dimensions of dying and death. Less, 30 percent, would look to physicians for spiritual comfort; 21 percent to nurses. In addition, only 36 percent saw the clergy providing broad spiritual support in their own dying days. Source: www.parkridgecenter.org/Page514.html
• The top concerns about the dying process were another key findings of the 1997 Gallup survey on Spiritual Beliefs and the Dying Process. These concerns are:
  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
• When the 1997 Gallup survey on Spiritual Beliefs and the Dying Process focused on “Reassurances That Give Comfort,” they found:
  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
  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
• A recent study led by researchers at the Dana-Farber Cancer Institute suggests that providing for patients’ spiritual needs is an essential part of end-of-life cancer care, and that terminal patients who feel those needs are being met receive more hospice care and opt for fewer aggressive or invasive treatments than other patients. Their overall quality of life, the researchers claim, is also higher. The researchers surveyed 343 terminal cancer patients, measuring their level of “religious coping,” or the extent to which patients used religious beliefs and spiritual practices to deal with the stress of their illnesses. Patients who scored highly on the religious coping measurement and who reported that their spiritual needs were met by the hospital staff were less likely to use highly aggressive end-of-life treatments like resuscitation, which may indicate greater acceptance in the face of death. Patients at all levels of religious coping reported better quality of life and received more hospice care if their spiritual needs were addressed. The results of this study were presented at the 2009 Annual Meeting of the American Society of Clinical Oncology, and printed in the Journal of Clinical Ontology.
• A 1983 study of 145 parents of children who died of cancer found that 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. Source: Cook, J Sci Study of Religion, 1983; 22:222-238.
• A doctor’s religious faith, or lack of faith, influences a patient’s end of life care, a United Kingdom study published the September 2010 issue of the Journal of Medical Ethics, has concluded. The survey found strong links between a physician’s specialty and faith and the likelihood of discussing treatments judged likely to end the life of their patients. Hospital specialists were ten times more likely to discuss life ending treatments than palliative care doctors, while those physicians who described themselves as “extremely” non-religious were twice as likely to have recommended treatments that would end life as compared to their religious counterparts. Source: Church of England Newspaper
• A qualitative inquiry into the spiritual journey of palliative care physicians was conducted by the Division of Palliative Care, Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada. The study sought a greater understanding of physician spirituality and how caring for the terminally ill influences this inner aspect. Conceptualized as a separate entity from religion, spirituality was described by participants as a notion relating to meaning, personal discovery, self-reflection, support, connectedness, and guidance. Spirituality and the delivery of care for the terminally ill appeared to be interrelated in a dynamic relationship where a physician's spiritual growth occurred as a result of patient interaction and that spiritual growth, in turn, was essential for providing compassionate care for the palliative patient. Spirituality also served as an influential force for physicians to engage in self-care practices. The study concluded: With spirituality as a pervasive force not only in the lives of palliative care patients, but also in those of healthcare providers, it may prove to be beneficial to use this information to guide future practice in training and education for palliative physicians in both the spiritual care of patients and in practitioner self care. Source: PubMed.gov

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Being With Dying

Communities of faith are often actively involved with meeting the spiritual needs of those who are experiencing terminal illness and their loved ones. Being with Dying is a practice developed by Joan Halifax, a Buddhist teacher, Zen priest, Abbot, and Head Teacher at the Upaya Zen Center in Santa Fe New Mexico Joan Halifax Roshi (the title she has a Zen spiritual leader) has been working in the area of death and dying for over 30 years. She had integrated wisdom and the Buddhist practices into the Contemplative End of Live Care training program that is given at Upaya. The summary below is based on Joan Halifax Roshi’s book, Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death.

Being with Dying: Cultivating Compassion & Fearlessness in the Presence of Death

By Joan Halifax

(Shambhala, 2009)

Book & in-depth CD set available

While the guidelines and learning practices developed by Halifax spring from her spiritual path as a Zen priest, they can be explored and fruitfully used by other faith traditions. Read the guidelines and do the Practice Exercise and explore how these can be tailored for use within your own faith community.

The Buddhist approach to death can be of great benefit to people of all backgrounds—as has been demonstrated time and again in Joan Halifax’s decades of work with the dying and their caregivers. Inspired by traditional Buddhist teachings, her work is a source of wisdom for all those who are charged with a dying person’s care, facing their own death, or wishing to explore and contemplate the transformative power of the dying process. Her teachings affirm that we can open and contact our inner strength, and that we can help others who are suffering to do the same.

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Being with Dying Retreat at the Upaya Zen Center

Main Guidelines for Being with Dying

There is a wealth of information in Being with Dying—too much, of course, for this column. One share that I can make is Halifax’s main guidelines for being with dying. They are:

Let the dying person take the lead: Let the dying person take the lead. Whatever the dying person wants, let him or her have it… you always follow what the dying person wants and needs.

I’m doing the best that I can: Remember the phrase: “Just doing the best that I can.” Sometimes things don’t go the way you want them; sometimes things go terribly awry. Sometimes you make mistakes, but you didn’t make them intentionally. You did the best that you possibly could at that moment… “It’s important to remember, you’ve done the best you can under these circumstances. Learn and maybe next time you will be a little more lucky.”

Give no fear: Remember that in a certain way, we really can’t give anything accept No Fear—this presence of courage, this presence of fearlessness.

Practice mindfulness: All of this is based on just one simple practice. All practices come from this practice. And that is the practice of mindfulness, bringing your attention fully into the present moment, being present fully for whatever is happening.

A discussion for communities of faith: Reflect on these guidelines. How are they similar or different from your own faith communities approach to being with dying? How can these guidelines be used to help those in your congregation who are caring for a terminally ill loved one?

A Learning Exercise

Learning to the Care of the Dying: There are many practices in Being with Dying that help us learn about the Care of the Dying. Here is one of them:

How Do You Want to Die?

In teaching care of the dying, Halifax often begins by asking questions that explore our stories around death, including the legacies we may have inherited from culture and family. Looking at our stories may help us be taught by what we believe will happen when we are dying, and open new possibilities for us.

STEP ONE:

We begin with a very direct and plain question: “What is your worst-case scenario of how you will die?” The answer to this question lurks underneath the skin of our lives, subconsciously shaping many of the choices we make about how we lead them. In this powerful practice of self-inquiry, I ask you to write it all down, freely and in detail (telling how, when, of what, with whom, and where), about the worst death you can imagine for yourself. Write from your most uncensored, uncorrected state of mind, and let all the unprescribed elements of your psyche emerge as you write. Take about five minutes for this.

When you are finished, ask yourself how you feel, how your body feels, and what is coming up for you—and write down these responses as well. It is crucial at this point to practice honest self-observation. What is your body telling you? Give yourself a few minutes to write down how imagining this worst-case death makes you feel.

STEP TWO:

Then take another five minutes to answer a second question: “How do you really want to die?” Again, please write about this in as much detail as possible. What is your ideal time, place, and kind of death? Who will be there with you? And a second time, when you have finished, give some attention to what is happening in your body and mind, writing these reflections down as well.

If you can, do this exercise with someone else, so you can see how different your answers are amazingly, your worst fears might well not be shared by others, and your ideas about an ideal death might not be someone else’s. Halifax states: "My own answers to these questions have changed as time has passed. Years ago, I felt that the worst death would be a lingering one. Today I feel that it would be harder to die a senseless, violent death. A lingering death might give me the time to prepare myself more fully. In addition, in my dying I might be of some use to others.”

STEP THREE:

Finally, after exploring how you want to die, ask yourself a third questions: “What are you willing to do to die the way you want to die?” We go through a lot to educate and train ourselves for a vocation; most of us invest a great deal of time in taking care of our bodies, and we usually devote energy to caring for our relationships. So now please ask yourself what you are doing to prepare for the possibility of a sane and gentle death. And how can you open up the possibility for the experience of deathless enlightenment both at this moment and when you die?

STEP FOUR:

A Discussion for communities of faith: After completing this exercise, share your personal reactions to doing this practice. Discuss how a practice like this can be tailored to your faith tradition and used to help members of your congregation prepare to care for the dying.

An Invitation to Share Your Knowledge

We at the Institute for Spirituality & Wellness want our web pages to reflect the best practices used by communities of faith. We invite you to share practices and techniques that you are successfully using for dealing with end of life care. We also invite you to send us your suggestions for improving and expanding these web pages.

Please contact Mary Montgomery at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

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Resources

Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death by Joan Halifax (Shambhala, 2009)

Being with Dying (Compact Disc) by Joan Halifax

Upaya Zen Center: The Upaya Zen Center in Santa Fe New Mexico was Joan Halifax. The center hosts weekly retreats and workshops focusing on practices related to engaged Buddhism, how to live in our world responsibly, with affection, kindness and wisdom. The site contains articles by Joan Halifax on dying and the grieving process as well as interviews and videos.

EndLink: EndLink is a resource for End of Life Care Education: EndLink was developed as an educational resource for people involved in end-of-life care. Rather than providing answers, the site attempts to offer frameworks for thinking about caring for dying individuals and their families. The content of the site was written primarily for health care professionals who work with dying patients and their families. EndLink contains a vast amount of information compared to many Internet sites. In order to improve the usability of the site, we have organized the material into modules, each including four sections: What, Why, How and Resources.

Endlink’s Religion, Spirituality, and End of Life Care Module: This is a course that was created by the Robert H. Lurie Comprehensive Care Center at Northwestern University Hospital.

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley, (Bantam, 1997).

Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life by Maggie Callanan (Bantam, 2009).

Five Wishes website

Paliative Care website

Hospice Foundation of America website

Peaceful Journey: A Hospice Chaplain’s Guide to the End of Life by Matthew P. Binkewicz.

The Art of being a Healing Presence; A Guide for Those in Caring Relationships by James E. Miller.

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