Sunday, July 27, 2014

On Death & Dying - Part 3

Please excuse my nearly two-month absence. I was managing another piece of home transformation: from tract home to tranquil retreat. (Sayonara fireplace - joi gin glass (literally “again see”). I continue to open and remove walls to bring the outdoors in  - allowing nature to nurture.

Another hiatus is imminent as my European Holiday quickly approaches: hiking in the Alps and fjords. We intend to post the 10-best photos each day to facebook.

In Part 3, I will 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.

Death is the cessation of all biological functions that sustain a living organism. Plain, simple, easy-peasy. “The cessation of all biological functions that sustain a living organism.”
The nature of death and mortality has been a concern of all religious traditions and philosophical inquiries. Death - the final frontier, the great unknown. We surround it with meaning including judgements of good deaths versus bad deaths. We attach beliefs of resurrection, reincarnation or rebirth, or that consciousness permanently ceases to exist - known as eternal oblivion.
Our judgements and beliefs are entwined with cultural and generational perspectives. They color our world and act as filters such that we believe our perspectives as truth. Defending our perspective as truth keeps us stuck. Can we agree that gravity is a universal truth? Birth and death are universal truths - but everything between forceps and stone is subject to interpretation and perspective. I contend that your truth, while assuredly shared, is not a universal truth. If one can start the discussion of death from that place of non-judgement, without moral or ethical overtones, then a real conversation can be had that will honor all opinions and perspectives and allow people to find their path to death.

Lets examine some of these beliefs that keep us from meaningful dialogue.
Morality - Morals refer to an individual’s own principles regarding right and wrong.  Notice it is an individual’s own, not a dominant belief imposed upon others. 
Culturally, we have a strong moral code around suicide. This was never more evident than in the events surrounding The World Trade Center and 911. Did you know that more than 200 people fell or jumped from the burning towers? How do we know that? Because they were photographed and the people within the buildings were vaporized. But DNA identification could be made from the remains on the sidewalks below. 
Sometimes, a single image captures it all - such is the photograph by Richard Drew of The Falling Man. It ran in The New York Times on 9/12/2001 to such outrage and vehemence that the photo was buried for years. Our response to such a photo is visceral, it touches places we don’t want to go, so we push back.
The Falling Man documentary is a wrenching watch and an effort to identify the falling man. It first aired in the UK in 2006 and finally in the US 18-months later (interesting delay donchya think?). In their search, they interviewed many families. Despite describing the internal temperature of the upper floors as climbing to 2000 degrees Fahrenheit, families protested, “That is NOT my father/uncle/brother/son/cousin. My father/uncle/brother/son/cousin would never jump. He was a devout Catholic and he would NEVER do that.” 
One woman’s beautiful swan dive was filmed, making her easily identifiable by her family. She had been a member of her high school diving team. She was survived by a husband and two young children. “She had a choice,” her husband said. “If she jumped,” he shrugged in resignation, “She jumped.” Interviews captured family struggles with their views of suicide even in extreme circumstance.
The fall was said to take about ten seconds. It would vary according to body position and time to reach terminal velocity — around 125mph —  but if someone fell head down with their body straight, as if in a dive, it could be 200mph.
All deaths in the attacks except those of the hijackers were ruled to be homicides due to blunt trauma (as opposed to suicides). The New York City medical examiner's office said it does not classify the people who fell to their deaths on September 11 as "jumpers". These people were forced out by the smoke and flames or blown out.” ~Wikipedia
In his article entitled, The 911 victims America wants to forget: The 200 jumpers who flung themselves from the Twin Towers who have been ‘airbrushed from history’, Tom Leonard states, “Even now, nobody knows for certain who they were or exactly how many they numbered. Perhaps worst of all, surprisingly few even want to know. … some considered that to choose to die showed a lack of courage. And in this country of intense religious fervor, many believe that to be a jumper was to choose suicide rather than accept the fate of God - and suicide in whatever circumstances is considered shameful or indeed, a sin that will send you to Hell.”

“How can anyone know what one would do in a situation like that, having to choose how you go from this Earth” The notion that she jumped is consoling to surviving spouse Jack Gentul in some ways, in that she exercised an element of control over her death. “Jumping is something you can choose to do,” he said, “To be out of the smoke and the heat, to be out in the air, it must have felt like flying.”
Notice if in this reading you feel resistance, outrage or disgust. It is THAT, that keeps us from meaningful dialogue about death. 
What is my point? My point is: if we cannot find a place to stand like Jack Gentul, a place of compassion and generosity for the other, we cannot even begin to have meaningful conversations about death that will include other points-of-view, belief systems, and circumstance. And I contend, any conversation that includes choice must include assisted death for the terminally ill as separate and distinct from a conversation for suicide.

Ethics -  Ethics and morals both relate to “right” and “wrong” conduct. However, ethics refer to the series of rules provided to an individual by an external source, e.g. their profession or religion. 
I’ve just proposed (and perhaps demonstrated with the jumpers of 911) that right and wrong can be circumstantial and that each case must be examined on its own merit. 
Is it ethical for companies to withhold birth control and abortion services? Its legal but some would argue not ethical. Would we withhold testicular care because it could affect reproduction? Is abortion ethical? Its legal but many would argue, unethical.
Who remembers the British woman who died in Ireland several years ago because, after fetal demise, she could not get an “abortion”? She died of sepsis with a dead, rotting baby in her womb. But that was an unusual case, you say. Maybe; maybe not.
Is it ethical to hasten death by withholding food and fluids voluntarily? Its illegal in many states but conversely, is it ethical to force-feed the "decisionally competent" choosing to hasten death via starvation? What about prisoners? Do we force-feed prisoners on hunger-strikes? As a matter of fact - we do.
Where is that boundary between personal/patient autonomy and the right of personal choice versus the sanctity of life from a religious perspective, or the concept of “do no harm” from a medical perspective?
’Tis a very slippery slope indeed. 

Value - The overwhelming majority of Americans who die are elderly and covered by Medicare. The Congressional Budget Office reports that one-quarter of all Medicare spending occurs in the last year of life. Medicare spending in 2013 was $586 BILLION - yes - with a capital B. One-quarter of that equals $146.5 BILLION … spent in the last year of life. Clearly not a good value. If we do not address this black hole, the Baby Boomers will bankrupt the country.
In Harvard Business Review’s The Strategy that Will Fix Health Care, its authors propose that Providers must lead the way in making value the overarching goal. “At its core is maximizing value for patients: that is, achieving the best outcomes at the lowest cost.” They cite six components, the second of which is: Measuring Outcomes and Costs for Every Patient. “The only true measures of quality are the outcomes that matter to patients.” The metrics can be translated into reportable outcomes: amputations and blindness and dialysis and heart attacks and stroke and death. 
Research says patients are interested in survival, then recovery and sustainability of health. When healthcare systems track and report outcomes that matter, in a way that is meaningful to patients, patients will be empowered in their choices.
How does this overlay onto real life?
Three weeks ago, an acquaintance’s 80-something, year-old grandfather was found to have a mass in his brain that was likely cancerous. They scheduled a biopsy. 
“Why?” I asked.
“Because they need to find out if its cancerous,” he said.
“No they don’t,” I argued. “At his age, it will not change his treatment. If its benign, they will not cut his head open to remove it. If its cancerous, they will not cut his head open to remove it. Chemo and radiation therapies will be poorly tolerated at his age... and brain cancer? At that age? Com'on - the chances of survival are slim to none; the surgery alone could kill him. So really, why do the biopsy at all; why do they need to know? It won’t change anything. Let him live out his days.”
They did the biopsy - it was cancer. Then they said he was not a surgical candidate and he should go home to make his peace. Which he did - and he was dead within 14-days. So why did they do the biopsy? I knew from cross-country and without ever having laid eyes on the patient that he was not a surgical candidate, nor would the biopsy results change the treatment course. They MUST have known that before the biopsy. 
Why did they do the biopsy and how much did that cost?  I dunno - when I am at my most cynical and sarcastic, and in a fee-for-service world where doctors get paid by the procedure, I assert it was because someone had a mortgage payment due.
This is a perfect example of: $146.5 BILLION … spent in the last year of life on ultimately, futile care.

I have another one - I was discussing no-CPR orders on those of advanced years. 
“I disagree,” my cousin said, “If someone is in a restaurant and chokes on some food, you should try to save them.”
First - this points to confusion in terms. The Heimlich Maneuver for choking is NOT CPR.
In 1996, The New England Journal of Medicine published an analysis of three popular series: “ER,” “Chicago Hope” and “Rescue 911.” Two-thirds of those victims survived CPR and were discharged back into their active lives. So a misinformed American public thinks CPR is survivable and beneficial? Statistics show a different and grim reality.
From the American Heart Associations website: Nearly 383,000 out-of-hospital cardiac arrests occur annually. 88% occur at home; less than 8% survive. What they do not track or report is - the percentage of survivors that are viable. After 80, only 3.3% survive to hospital discharge - this from Dr. David John, former geriatrics chairman of the American College of Emergency Physicians. Of that 3.3%, some are not viable.
You wanna gamble on being some fraction of the 3.3% who survives AND is viable? That’s how people end up in the ICU on a ventilator while their family rings their hands and struggle with the guilt-laden task of unplugging Granny.
Let me reiterate: When healthcare systems track and report outcomes that matter, in ways that are meaningful to patients, they will be empowered in their choices. In an informed, rational world, the fully informed grandfather chooses for no biopsy and no CPR. But nothing surrounding death is rational unless one has time to discuss and digest the issues.

When we try to address these emotionally laden and highly personal issues, people like Sarah Palin talk about Granny Death Panels - a term coined during the 2009 legislative battle over the Affordable Care Act. She charged that language in the bill reimbursing doctors to counsel patients about living wills, advanced directives and end-of-life care options would ultimately judge them “worthy of medical care” … or not.
Fellow blowhards - oops-did I say that with my out-loud voice? Let me start over: Other prominent and highly respected Republicans including Newt Gingrich, Glenn Beck, Rush Limbaugh and Michelle Malkin took up the call and backed Palin's statements. One poll showed that after it spread, about 85% of respondents were familiar with the charge and of those, about 30% believed it true.
Is it any wonder that a meaningful, national dialogue regarding End-of-Life options and care is elusive?

Patients who live with an incurable and progressive disease often have to accept many losses. Their lives may be filled with pain, physical limitations, dependency on others, and a decreasing ability to engage in activities that once were a source of joy and satisfaction. Some people can accept such limitations with grace and good will, but for others, the inability to have a voice that is heard or to make a choice about dying that is respected is an intolerable affront to their personhood. Many in this group want to know that there are still options and choices available to them during this time. Only the person living with the terminal illness can know when the burdens of living outweigh the benefits.
For the most part, people do not fear death - what they fear, and wish to avoid, is unnecessary suffering during the dying process.” Michael White, JD in his testimony before the CA Assembly Comm. on Aging and Long-Term Care  2/19/2013.
The tension exists between beliefs that EoL choices should be founded mainly honoring the sanctity of life versus compassion for those who are suffering. Said another way, sanctity based on religious and moral principles versus compassion based on respect for personal autonomy.
If we concur with Harvard Business Review, that healthcare is moving toward “maximizing value for patients: that is achieving the best outcomes at the lowest cost”, consider that EoL care in this country is in for an e-ticket ride. We bundle and improve diabetes care (estimated to affect 50% of us) but neglect the conversations for change in EoL care (guaranteed to affect 100% of us). We are ill prepared for death because like anything, preparation requires attention and intention. The last year of life is the most expensive though reports clearly demonstrate that money makes no difference.
Perhaps we can take a page from the Hospice playbook and have conversations for how we want to live until we die. What's important to you right now? What are you hoping for? What are you afraid of? What is quality of life to you? If this were to happen; could you live with it? What about that? And that? 
Could we switch off the auto-pilot of life and have conversations to really know one another, what we value and brings precious meaning to our lives? Could we help bring that value and fulfill on such desires? What would life be like if your loved ones helped fulfill on your deepest desires? Well, that'd be a life worth living; wouldn't it? There are some who contend that being known is our greatest desire.

Notice that I have no answers, only questions. But I hope this series has given you pause and opened your eyes to those hidden forces that exert pressure on your choices in life and End-of-Life. My intention is that you start conversations in your family, honest, uncomfortable conversations about who and what are important to you and how you want to live until you die - then do it. Live how you want to live - until you die. Live out loud and true to your heart.

What are the elements that leave me feeling like I live with heart? I’ve distilled it down to five things: meaningful work, music, exercise, writing, and spending time with those I love. I work to put two or more of these elements into each day.
Confucius said: Wheresoever you go, go with all your heart. As a reminder, this phrase was painted on my wall, the one removed during the remodel. The men doing the work were so taken with it that unbidden, they cut it out and saved it. It speaks to me, it spoke to them. Let it speak to you. 

Wheresoever you go, go with all your heart. ~ Confucius