Difficult Conversations About End of Life – DNR vs. Health Care Power of Attorney

What many people don’t want to consider – is the prospect of when a person’s DNR/DNI (do not resuscitate/do not intubate) directions may come into conflict with what an agent under a health care power of attorney decides. When a surrogate overrides the patient’s stated wishes (for example, where the children’s interests in “saying goodbye” override a mother’s DNR wishes) Check out this very powerful video of two daughters recounting the difficult decisions they made regarding their mother’s health care.

This video highlights the slippery slope of medical intervention and not knowing when the intervention will end and a daughter’s grief about going against her mother’s wishes.  She poignantly describes her mother’s searching eyes which seemed to ask “why are you doing this to me?”  This is an excellent reminder for all of us, especially those who work with older people who are facing health challenges: have the conversation with your kids or other surrogate decision makers and make your wishes explicit!  It is also useful to note the ongoing need for what the medical document known as a DNR means –it doesn’t mean “no medical care” – it means do not resuscitate.

Between the short periods of time a doctor may spend (if any time is spent at all) explaining to an older person or one who has a medical condition or disease which would make a DNR, and the reluctance that most people have to talk to their loved ones about these difficult situation, these conversations are hard, but worth the effort according to all the people I’ve spoken to about it.  I always encourage my clients, and sometimes also participate in family meetings around this issue of facilitating a specific conversation about identifying a older adult’s wishes, talking about particular scenarios and using specifics where appropriate to illustrate how wishes might be carried out.

Daughter who decided, when asked by the doctor whether she would give permission to put her mother on ventilator decided that she would have done things differently and would have declined intubation.  Daughters could see the pain their mother went through and finally asked mother to respond by blinking to their question “do you want to be taken off the ventilator?”  Very powerful video I strongly recommend.  This is why I think it is important to take time with clients, who are willing and interested in getting real about the difficult end-of-life choice, to discuss with them and often with their adult children the difficult but inevitable prospect of “letting go.”

Along similar lines is an article by Sally Mauk in The Missoulian entitled “Doctor Says Advances Prolong Life, Make Dying Harder,”   The article pinpoints several of the difficult facts that we baby boomers must face in light of the experience of many of our parents’ deaths as well as medical and economic realities that have dramatically changed in recent years.  Mauk’s article is primarily about Dr. Ira Byock, a past president of the American Academy of Hospice and Palliative Medicine.  Byock’s website is www.dyingwell.org and his book Dying Well, published by Riverhead in 1997, is on my office bookshelf, and his newest book “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life,”  is a book I’ll be reading soon.  It is best to take the time to start thinking about these issues so that a conversation with loved ones will be more likely and probably less stressful – start with your doctor and don’t forget to consider how the medical and legal documents can work together to support your goals.

Dying is Part of Life

Dying is part of life – so why is talking about it so difficult?  Many reasons for that unanswerable question, but now – more than ever is the time we can start reflecting.  Never have we had so many octogenarians and nonagenarians on the fact of the planet.  Many are living longer more productive lives than they ever dreamed possible.  Some, many of them women, are running out of money.  As the life-extending reach of medical technology continues, it forces many questions, some of which are very uncomfortable.  I just read Judith Johnson’s fourth installment in the series of posts about making peace with death.  You can read it here.

Not all of us are afraid of death (which is one thing) or afraid of the process (quite another for many of us).  The Woody Allen quip comes to mind: “I’m not afraid of dying, I just don’t want to be there when it happens.”  Why does the dying process have such a bad rap?  Is it the uncertainty of what is happening, where someone is going (or not) that makes so many of us turn away?  It is a taboo based on fear and avoidance, how odd that it is avoidance of the inevitable.  How does that turning away from dying get unpacked into steps you can try if you want to be “present” and make peace with death?  Johnson offers five practical steps:  (1) see death as normal (part of life); (2) don’t try to run away or avoid it – this is the biggest tip in my opinion because she touches on the recognition that “death is a great teacher of how to embrace and honor life more deeply;” (3) focus on being of service to those involved in the process; (4) be authentic and express yourself in loving ways; and (5) allow yourself to experience the full range of grief and sorrow that are all parts of dying, death and grief.

I ran across another article about a new course being offered on Gabriola Island in Canada called “Nothing Left Unsaid.”  It looks to be an extension of the hospice conversation and all the services it offers for those not necessarily in the end stages of an illness.  I found the article’s reference to grief perhaps being classified as a mental illness in the next DSM (Diagnostic and Statistical Manual), and that reminded me of another article about that very topic – “Should Grief Be a Mental Illness?” by Joseph Nowinski, Ph.D.  It seems this fear that grief will be classified as a mental illness originated in a January 25, 2012 article entitled “Grief Could Join List of Disorders” and announces that, based on a new report, the criteria for depression are being reviewed by the American Psychiatric Association and could be expanded to include grief in the DSM-V.  Where does this leave those of us who are challenging the death-denying traditions and practices in our own ways? I think it is life-denying, because death is part of life.

The mental health implications of removing the grief exclusion from the definition of depression in the DSM-V are controversial, to say the least. Most of old age, along with many aspects (behaviors) of childhood are now “disorders” or fall within some arguable definition of a mental illness.  What does this say about our culture and its views towards aging, the dying process and death?  It is more of the death denial in our culture.  According to many longevity seekers, death is not necessarily inevitable or the result of natural consequences, rather it is more like a disease to be overcome, a challenge to be bested.  This reminds me of Dr. Sherwin Nuland, author of “How We Die,” and several other insightful books  A recurrent theme in his books is forthright talk about aging, dying and many other life topics that tend to make us uncomfortable.  Next time I’ll write about another favorite doctor/author of mine.