Last week the Dartmouth Atlas Project released startling information about how many Americans with end-stage cancer die in intensive care units and acute care hospitals, with all the attendant invasive procedures, family isolation and suffering that implies. About one third, as it turns out. Too many, considering almost everyone's stated preference is to die at home.
The Project's other revelation was astronomical variation by location . People dying of cancer in New York City are seven times more likely to end their days tethered to tubes, probes and machines than those dying of the same diseases in Iowa City. Seven times. The cancer patients in New York don't live longer than those in Iowa City. It's just that technology and agony are more likely to dominate their last days.
Tonight, the PBS show Frontline illuminates the Dartmouth data with a bedside view of the New York style of end-of-life care. Called "Facing Death: Families make end-of-life choices" it offers examples of physicians, patients and families who do face death honestly and others who studiously avoid facing it. I encourage those who want to understand how current medical practice fails patients at the end of life, and glimpse avenues toward hope, to watch the Frontline documentary with these questions in mind:
Will the medical profession - particularly those in New York - be affected by this Frontline documentary? Will it spur medical educators to develop classes on how to talk meaningfully with people nearing the end of life? Young doctors need to learn to ask more open-ended questions, take more time to find out what is on people's minds and be more honest about what to expect from the treatments they offer. It should persuade acute care physicians to enlist chaplains, psychologists or others prepared to support patients and families through the grief of impending death, if they cannot do it themselves.
"Facing Death" should spur everyone to work hard to extract a candid assessment of any treatment's chance for success. We should prepare our loved ones with knowledge of our beliefs, attitudes and preferences. Sadly, most of the physicians shown here do not work from a model with their patients at the center, and few communicate in a style that gives full and frank information and solicits patient input. Until they change, patients and families must themselves face an approaching death and drive the discussion of end-of-life choices.
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At about the time my mother was dying a friend of mine - in her 40s - was diagnosed with lung cancer. She had watched both parents die of cancer. She decided not to "fight." She did some chemo but in the end felt it wasn't worth it. Many people gave her a hard time about it. Many deserted her. She worried she was doing something wrong. I told her I thought she had a right to choose her own death and that you can't do it wrong.
Life is a journey toward awareness and our perspective changes when we come to understand that attachments to impermanent things, relationships and states of being are major causes of suffering. This documentary seems to reveal that extending attachment to the life experience through denial of the reality of one’s impending death is often enabled by a collaboration between those in the American medical profession and the good-intentioned but ill-informed actions of family members.
Buddhists are very focused on accepting death as a natural process that is simply another step in a very long journey. For us, death is a friend, not an enemy, and finding ways to reduce suffering while we are alive is a primary goal.
Watching this Frontline documentary made me realize how much American suffering around the topic of death is self-inflicted. We are all dying; it is a matter of ‘when’, not 'if'. Having a good death is just as important as having a good life. Unfortunately, the American end-of-life system of prolonging life as much as possible does little to prepare one for the acceptance of death and it generates an incredible amount of unnecessary suffering for those approaching their final days.
And how far should we push patients to the edge, as per Dr Groopman, allowing suffering and loss of dignity?? His perspectives were out of touch and showed a lack of compassion.
so that patients will not be treated-to-death,
which is often standard medical care:
If a particular pattern of terminal care is common,
then it becomes the standard.
Otherwise the doctors might be sued for malpractice.
But patients also need to take the initiative to change default terminal care.
If these patients had no Advance Directives, whose fault is that?
All such problems of terminal care could be avoided
by the even more radical step of joining the One-Month-Less Club.
We thereby declare that we will live well now and omit the last month of our lives,
which might be spent in the Intensive Care Unit.
Here's more about the One-Month-Less Club:
http://www.tc.umn.edu/~parkx032/CY-1MLC.html
James Leonard Park, advocate of the right-to-die with careful safeguards.
These self-centered conversations could have been far different. In a humane and imaginative world, terminal patients could be offered deals like "We pull the plug on you and save $200,000 for your insurer, who gives half of it back as grants of $1,000 each to 100 impoverished children usable for health care and nutrition. If I get into a gradual terminal decline, I intend to fight for the right to make such deals and schedule my own death at a convenient and economical time. I may lose the fight, but I'll die fighting.
Watching this brought back both of my parents' 3-week terminal hospitalizations, Mom's all-ICU; Dad's on some floor. Brutally hard to revisit those environs and times, as watching this virtually guarantees for we who have been through it.
You are of course correct in saying that "until they (providers) change, patients and families must themselves face an approaching death and drive the discussion of end-of-life choices." I prefer the hybrid phrase "patient-family" (no slash or and) to better anchor and solidify who we who are losing a loved one are: the unit deserving of care (and too often the uninformed recipient of treatment).
I always get stuck on the word "must." Yes, the medical world is rife (and maybe ripe) with various pulses of self-reform. The trouble is that since we citizens aren't doing our work, some providers and institutions are trying to take on more than their already gargantuan load, to do our work for us. This is bound to fail.
So how do people get smart enough, brave enough, mature enough, to look at dying and death before it's about to plant it's black kiss on their cheeks? How do we replace fear with liberation for those for whom dying and death is still an abstraction?