-Atul Gawande in “Letting Go”, New Yorker

Ever since I joined Speaking of Faith, there has been editorial talk about wanting wise voices on death, or more specifically, end-of-life.  Recently we came across this insightful article in the New Yorker, and a follow-up interview on Fresh Air, that have bumped this up on our priority list.  In Krista’s words - “it is time for us to take this on.” 

What are your stories about approaching end-of-life, or end-of-life medical care?


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Reflections

Indeed an insightful article. So much of what is offered at the end of a life usually to a terrified patient and family is misconstrued as a promise of a cure. We really need to reappraise what we are searching for.
I wrote about my family's experience with this here
http://evimedgroup.blogspot.co...

Looking forward to a cogent discussion of this very timely topic.

Javier Kane, MD is one of the leading voices in pediatric end of life care. He is on the faculty at St. Jude Children's Research Hospital in Memphis, TN (www.stjude.org).

Gwande's piece is terrific, as are all his other articles on medicine. It does entirely lack, however, any consideration of faith or religion. While Gwande deeply examines end of life issues from the perspective of the professional, it is astounding that he fails to consider the spiritual beliefs of a dying person and how those affect end of life decisions. This is more astounding when the Coping with Cancer study that he references has performed a great deal of research on how one's faith affects their end-of-life decisions.
If/when you examine this topic, please also talk to those researchers at the Coping with Cancer study. They have looked at how one's faith affects medical choices and have found some surprising results. For example, patients do better when their spiritual caregiver is their doctor. When one's spiritual caregiver is a pastor, the patient usually has worse than normal end of life outcomes.
These kinds of intersections between faith and medical decisions (which do more to drive the outcomes of patients than any other) are the most important but are entirely neglected in Gwande's piece.
Finally, please be aware of the robust Christian tradition of ars moriendi. This tradition has long served to guide believers. I've written about this in my book, The Art of Dying: Living Fully into the Life to Come. And other writers have as well, such as John Fanestil in his book, Mrs. Hunter's Happy Death. Many Christians are giving this tradition another look in our age of extended and complicated dying.

Talking about the end of time in this body, on this earth, is sooo important. In the hospital setting - almost everyday I encounter people on the edge of death or they have had a near death experience. The really unfortunate problem is that most of the time the patient does not get to process their state of disease with anyone. The MSW staff is concerned only with getting the patient discharged to the next level of care. The Chaplains are few and sometimes they are volunteers. The MD's and RN's hardly have sitting time to discuss options and risks of various treatments. The conversation should be more than a 5 minute standing explanation -to the family and patient. It is a rare situation when a patient has approached this topic of death or life on a vent, etc - when they were healthy. Families could benefit from discussing these topics earlier in life - or at the very least - no one should be admitted in the hospital without a living will or some type of MPOA...to make sure their wishes are followed. Too often - tests, surgeries, treatments- chemo and radiation- and procedures continue to be done on patients without really informing the patients and families about the risks and benefits. What's the Prognosis - is the question to ask. And then the family can educate themselves as much as possible. Fear of the end is so sad to witness. There is so much to learn - other perspectives - from Hinduism, etc where we can have less fear of the end of this time - in this body. Take good care. Blessings to you as you educate us.

I am a hospice social worker. I have learned so much in my job about courage, resilience, denial, love. I have held the hands of patients as they have died, sat at the bedside of a dying patient while family members talk animatedly about their loved one's life. Once, I witnessed a family at the bedside at the moment the patient was dying. They asked me if he could hear them. When I said that he could, they all touched him, crying and saying, "I love you, Daddy. I love you. I will see you soon." The patient died at that moment, with those words in his ears. Then, there was the elderly woman who shared with me precious childhood memories of her family sitting on the front porch singing hymns. Her daughters were present and had never heard these stories before. I had a 103 year old patient who quoted Shakespeare sonnets to me and told me about going to speak easies in Chicago during prohibition. There was the young mother whose sister recorded messages of the patient saying "I love you" to her two young children and placed the recordings in stuffed bears for the children to have forever.

There are not so pretty times, too, when for one reason or another, someone is left to die alone. At those times, hospice work is particularly critical. The sacred task of honoring their lives, marking their existence and their passing, falls to us.

For those whose bodies have outlasted their cognitive and communicative abilities, we are challenged to find ways to reach out. Sometimes, it is a song, a touch, a voice. Most times, it is simply a caring presence. Silence can be a powerful medicine. It is difficult at times to know what is helping, getting through. We spend a lot of time in hope.

Most importantly, I see my job as a keeper of stories. The many stories of the many patients and families that have trusted me with the most private and sacred moments of their lives. It is sometimes an overwhelming responsibility, but one that I cherish and honor.

When you begin to put together a piece on this topic, please consider talking to Frank Ostaseski, the founding director of San Francisco's Zen Hospice. In 2003 he founded the Metta Institute that features an end-of-life care practitioner's program. He's eloquent and has incredible stories to tell from his years of experience working with the dying.

There are wonderful groups who are certifying music practitioners and music thanatologists to provide music for the dying, usually through hospice and in hospitals. It is anecdotally and scientifically well documented that palliative live music (these musicians usually play the harp) assists in easing pain and fear so that the patient has better quality of life - and of death - at the end. One organization is MTIA (Music Thanatologists International Association) whose members are from the US, Australia, and Canada. Another is Music for Healing and Transition Program, plus several other training programs in the US. Among the many hospitals using Music Thanatologists is the Catholic Hospital in Eugene, OR.

Please consider talking with either Dr. Gail Austin Coone, immediate past president or Dr. Sean Morrison, president, American Academy of Hospice and Palliative Medicine. As Director of Marketing for AAHPM, I'd be happy to coordinate these interviews for you.

If I look at death as a doorway, with life as I know it here on the front side of the doorway, then this article does such a great job of describing many of the issues that lie on the front side of the doorway, and that we’ve run away from as a society. Without a doubt, the issues are enormous and we should have them on the table.

I think that one of the reasons why we have avoided these “front of the door” issues is that we are so uncertain and anxious about what happens on the other side of the door. The spiritual perspective and “faith” that each person holds will drive what they might be willing to see or expect on that other side of this doorway.

It seems pretty unlikely that much progress can be made in solving the issues and questions on the front side of the doorway without first addressing the back side of the doorway questions.

I’ve recently published a book (Peace at the Edge of Uncertainty) that deals with this issue - that “doorway of transformation”. While I don’t feel like I answer many questions, I do attempt to at least set the table for thought and discussion centered on the concept of dying from the perspective of spirit.

http://neilhanson.com

I have metastatic breast cancer (stage 4) with which I was diagnosed 2 years ago. I actually participated in the series “Repossessing Virtue” in April 2009 from the perspective not of an economic crisis but of a health crisis. Many of the issues are the same.
I read the article by Dr. Gawande with some dismay – that seemingly so many medical professionals are unaware of end of life issues that have nothing to do with curing the body. At this point in our medical knowledge of metastatic cancer, it can not be cured. And treatment can be as deadly as the disease for some people. Patients who are able to hear and receive this information (or who can be helped to do this) are given the possibility of real transformation and healing in their lives. For reasons I mentioned in the earlier article, I was able to hear and receive such information.
My oncologist at Massey Cancer Center in Richmond, VA, as well as the doctor at Sloan Kettering in NY from whom I sought additional advice, were honest but compassionate. When I was diagnosed as stage 4 with a metastasis to the liver in a spot very difficult to treat except through chemotherapy, she looked at me kindly and said with honesty something like, “The average life expectancy of someone in your position is 18-24 months”, quickly adding that because I could take a specially targeted drug Herceptin, I certainly had a longer time frame possible. We would find out in time. She advised me to get my affairs in order. I was fortunate in that my financial affairs were in order as well as my emotional and spiritual states. They were stable and strongly grounded. At Sloan Kettering, it was reiterated that there was not a cure for my cancer, though possibly other options to chemotherapy, and that palliative care was all that was available at this time. I could hope for some good quality of life if my treatment progressed well and the disease could be kept at bay without too much toxicity to my body. The term used now is NED, or no evidence of disease . At which time I said that quality of life was more important to me than quantity and that I would not be receiving chemo on my death bed. They nodded understandingly.
Cancer or any illness can be one of life’s great Teachers. It can be a blessing. As another cancer patient wisely remarked, we are the lucky ones. We have compelling reason to think about many deeply personal and spiritual issues and share them with those we love. We have time to heal, to love, to forgive, to ask forgiveness and be forgiven, to grieve lost relationships and dreams, to say goodbye and to prepare for the next journey in our existence when our physical body no longer exists. There are many who can help us do this if it seems difficult. This is part of what hospice can do beyond physical care and pain management necessary for a more graceful end to life.
Fortunately my treatment has progressed well, and I still have some quality time left. Though there is evidence of disease now after 18 months without it and I am under going treatment again, there is life to live and joys and sorrows to be experienced. It is not the time for me to discontinue aggressive treatment and enter hospice. I am grateful for the health care professionals who have allowed me to live more honestly and consciously.

apples