Saturday, May 3, 2014

On Death & Dying - Part 1

Are we prolonging life or postponing death? Is there a difference? What are the salient issues that frame this conversation in America - the land of the free and the home of death denunciation. The medicalization and mechanization of death, OUR obsession with intervention and saving the patient at all costs, is robbing us all of our right to die in peace.

Follow the money. In a free market economy, money tends to frame most issues. I will touch upon the monetary issues that drive insurance and constrains end-of-life choices/care.
Our puritan roots and religious beliefs also steer this conversation down particularly narrow paths, limiting our choices with the promise of damnation or reward.
Lastly and perhaps most importantly, I’ll discuss how fear keeps us from having meaningful, reformative conversations in this country. How threats of Granny Death Panels and cost-saving rhetoric keep us stuck, outraged and unable to make common sense reform.

Lets back up. Life expectancy versus life span. Life expectancy is the average age of death of a cohort born in a particular year. In 1900, US life expectancy was approximately 48 years. In 2000, it was nearly 79 years.
What changed? Its not that we are living longer; its that we are not dying in infancy. High infant mortality was clearly exemplified by the Victorian practice of naming children only after their first birthday. The life expectancy average has crept up as more of us live to old age - purely a function of NOT dying in infancy or childhood. Much of this gain is attributed to improved nutrition and medical care (fewer childbirth deaths, vaccines, emergency care, etc.). 
Infant mortality rates are closely tracked worldwide. In ranking the infant mortality rates of 224 countries - the world leader for infant survival is Monaco, followed closely by Japan, Bermuda and Norway. Bermuda? Where is the US? #55.
In viewing the US from a public health perspective - we outspend the globe in healthcare, are 55th in infant survival, have skyrocketing rates of obesity, hypertension, diabetes, cardiovascular disease leading to heart attack and stroke… yes - trust I’ll discuss the Affordable Care Act (ACA) and our next steps.
Due to poor public health, for the first time since 1900, US life expectancy has downturned. Theoretically, children born today will not live as long as their parents. Why? Er… because of skyrocketing rates of obesity, hypertension, diabetes, cardiovascular disease leading to heart attack and stroke. The famous, now infamous American diet, exported globally, is known to accelerate disease. 
Let food be thy medicine and medicine be that food. ~ Hippocrates. 
But I digress.

Death once occurred so commonly in early life that it was not so foreign. In the last decades, death occurs in hospitals, away from families and loved ones such that my Popo (Cantonese grandmother) resisted hospitalization, in her belief that it was the place to die… and indeed, it was. We expect to live a long time and are outraged  with diagnoses that thwart this expectation. We expect the medical community to fight death to our last breath and with the last dollar. As a people, we are divorced from death, alienated from its discussions and terrified of its approach.
You think not? Okay - do you have your Advance Directive (AD) completed and on file with your doctor? If you don't know what an Advance Directive is… I rest my case. If your answer is yes; Bravo! You have taken the first step, identifying one who will speak on your behalf when you are unable to do so. You have preemptively identified which life-saving procedures you desire and refuse. If your answer is no - I’m sure you can site numerous reasons for not having this basic document completed. You are busy, you are young, its an uncomfortable topic - one we would rather avoid - and so we do. 
Once we reach a legal age, an Advance Directive should be activated. Death can come unexpectedly and at any age. Someone should have the legal right to speak on your behalf. And that someone should know you, your wishes, and have the courage to carry them out. Obviously, an AD for a healthy, young adult would/should probably differ from… mine-for instance.

Let me tell a few tales. We cared for an elderly man dying of terminal lung disease. That end-of-life shortness-of-breath is distressing for patients and families. We can medicate for that, to ease their sense of air starvation - but watching someone gasp for air is awful. “Do something!” his wife commanded. (Note that at any time, the AD can be revoked by patient or family.) Against his written instructions, doctors intubated him and attached him to a ventilator. After many days, when he was weaned from the machine, he was livid. “Don’t ever do that to me again; let me die.” But the next time - when death neared - his wife panicked and instructed doctors to intubate. They did - FIVE times before he finally succumbed to his terminal illness. After each episode, he was outraged and implored them to stop. Notice that  while these interventions may briefly postpone death, they do not prolong life in a meaningful way. He spent his last days struggling against a machine, unable to talk or spend final moments in communion with those he loved. Did anyone stop to consider his wishes and his experience of his final days? Perhaps - but not in a way that honored his word.
This exact scenario is played out daily in hospitals across the country. These decisions, sometimes advanced by well meaning doctors and made by families in the Emergency Departments or ICUs can tear them apart. Best that we discuss end-of-life ahead of time, at length and ad nauseum.

My father had Alzheimer’s disease. Earlier, he completed a family trust which included his AD. In his AD he hand wrote additional instructions: No tube feedings, IVs, no heroics to prolong a life that was vegetative. His wishes were clear. He desired a natural death.
When the body starts to shut down, tube feedings and rehydration through intravenous fluids are not shown to help or prolong life. So why do we persist? Because we feel guilty doing nothing. When Dad stopped swallowing, Mom withdrew all therapy; Hospice subsumed direction of his care and he died within days. My mother, a career nurse who well understood the issues, made a shocking statement. “If Daddy hadn’t written down those things, I’m not sure I could have gone through with it.” She had full authority to negate his AD and pursue aggressive care. It took courage, moving beyond guilt and regret, to follow his instructions. Allowing a natural death is often the kindest, most loving action to take. You want someone to follow your wishes? They need to be written and discussed. Capiche?

Kaiser Permanente offers an Advance Directive class. People can leave class with their document completed. It is two-hours well spent and can be the springboard for conversations within the family. 
There is something to be said for committing to a course of action with a signature. Ask anyone who has ever cohabited before marriage. After marriage, they say nothing changed and e-v-e-r-y-t-h-i-n-g changed. Do it! Notice if you are feeling resistance at this moment. Fear takes many forms and keeps us stuck.

Issues like the right-to-die, death-with-dignity, assisted suicide, right-to-life and pro-choice are ones that evoke strong feelings. Strong emotions can be polarizing and divisive. In opposition we become right, righteous, and deaf to views unlike our own.
I question the capacity of those, unable to confront their own mortality, to engage rationally and respectfully in these larger issues. The swirl of arguments are minefields fraught with dogma, rhetoric and fear mongering - all of which dissuade conversations that can help people find their path. 

Physicians make drastically different choices at the end of life. What do they know that the rest of us don’t? “Doctors have seen death and dying from every vantage point except it personally happening to them. When you’re close to the fire, you know what it is to get burned.”
Dr. Michael Gunther-Maher is a friend, a geriatrician and palliative care/hospice doctor. He was featured as one of several doctors addressing How we Die in the Sacramento News and Review. The article is moving and I hope it moves you to thoughtful action. Read it here:

In Part 2, we will start to examine the healthcare industry, reimbursement and how that affects our end-of-life choices and care.


  1. As always, a VERY thought-provoking blog, Lorin. You bring up some questions that most people would be hard-pressed to answer--me included. I read the "How Doctor's Die" article as well....looking forward to part 2. Tina

    1. Mahalo Tina! Now look inside, find those answers for yourself and start the conversation w/in your family. Its important and will ease the burden of decision making for those doing the heavy lifting. xoxo

  2. Thanks for talking about this issue. It is so important to have discussed and put our wishes in writing. In the emotion and stress of end of life, rational thought often goes out the window. Eddie and I have had our legal work done for years, but we re-visit it with our lawyer every few years. Just as reinforcement! Look forward to part 2

  3. Your first point is one I had not pointed to: we are less likely to make good decisions under duress. You and Eddie have been exemplary on so many levels. I am thankful for the example you have and continue to provide. Grateful for your friendship. xo lb