Sunday, May 25, 2014

On Death & Dying - Part 2

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

A good death. What is a good death? Most Americans are united in this thought - we want to die at home, in our own beds; preferably in our sleep and surrounded by those we love.  

My Uncle Bill did that. He had the BEST death. Uncle Bill was 96 when his solitary kidney started to fail. Not his mind - his body. For the last week, he filled his home with family. People brought great vats of food, sat around and talked story. Uncle Bill called the mainland to express his love, “You were my favorite family,” he said, “And I love you.” This from a man who rarely said, “Boo.” (To see a full accounting of Uncle Bill, scroll to March, 2011: Moon Chee Eulogy.) Uncle Bill died the way most of us want, methinks, with his wits and family about him. He drifted into sleep and faded from this world while the Packers bruised the Steelers in Cowboys Stadium during Superbowl XLV.

What made his death the best death? Lucidity and painlessness.  How does one meet a good end? Start with a good life - not from a moral sense but from a health sense. You know the drill: no smoking, curb the eating to maintain a normal weight, limit the hooch (but not the hoochie-coochie) and exercise daily. Why? Because a lifestyle that discourages chronic disease, while no guarantee, is a step toward a good death.
Only 10% of Americans die thusly. The rest die in hospitals and nursing homes where - if an Advance Directive and/or POLST (Physician Orders for Life Sustaining Treatments) are not clear and filed - staff is obligated to a prescribed course of rib-breaking, resuscitative efforts. Let me reiterate the opening lines in Part 1 of this series: the medicalization and mechanization of death, OUR obsession with intervention and saving the patient, is robbing us of our right to die in peace. Sometimes, saving the patient is not the best course of action.

Trajectories toward death. The four common disease trajectories are: sudden death, terminal illness, organ failure and frailty.  Sudden death needs no explanation. Its my personal favorite though more difficult for family and friends. 
An example of terminal illness is malignancy; patients function quite well until the last few months of life. Steve Jobs, for instance, continued in his role as CEO of Apple just months before his death.
Organ failure is characterized with disease exacerbation-resolution round-robins in a slow spiral of decline. Chronic Obstructive Pulmonary Disease  (COPD) and Congestive Heart Failure (CHF) follow this slower trajectory. Ultimately, we all die of organ failure, something  eventually stops: our heart, liver, kidneys or brain. 

Frailty is a state of low function and steady deterioration; they fade away. You can see frailty - they are waif thin and feeble. The open heart team’s term of endearment for the frail was “potato chip.” If a patient was called "a little potato chip", I was on notice to be extra, EXTRA careful. After a decade on that team, my personal opinion is to avoid ALL procedures on potato chips. They are brittle, they break - then they die.

Given the current trend of dying in institutions, lets examine the forces exerted there that affect our choices.
Reimbursement. Healthcare Effectiveness Data and Information Set (HEDIS) is a widely used set of performance measures in the managed care industry. HEDIS was designed to allow consumers (patients) to compare health plans against each other and against regional and national benchmarks (outcomes). “An incentive for many health plans to collect HEDIS data is a Centers for Medicare and Medicaid Services (CMS) requirement that health maintenance organizations (HMOs) submit Medicare HEDIS data in order to provide HMO services for Medicare enrollees under a program called Medicare Advantage.” In essence, one must collect/report HEDIS data to become eligible and accredited as a Medicare provider. Care is tailored to the metric. Succinctly: No play; no pay. 

Who/what is covered by Medicare? This info taken directly from, the Medicare website:
Medicare is a health insurance program for: people age 65 or older, people under age 65 with certain disabilities, and people of all ages with End-Stage Renal Disease (permanent kidney failure requiring dialysis or kidney transplantation).
Part A covers hospital insurance, skilled nursing facilities (but not custodial or long-term care), hospice, and some home health.
Part B covers medical insurance (physician services and outpatient care), physical and occupational therapy, and some home health.
Prescription Drug Coverage includes an annual, per person, medication budget.

But what does HEDIS have to do with end-of-life? There are numerous non-HEDIS interventions that promote healthy behaviors resulting in long-term cost effectiveness, a good life and a good death.
Did you see the movie Escape Fire (recommended in my Halloween and Healthcare blog of November 2013)? In it, a cardiologist alludes to HEDIS when she says, “I can spend an hour talking to a patient about diet, exercise, their health consequences, something that can change the course of their health, and receive reimbursement of about $45.00. In that same hour, I can take a patient to the cath-lab, insert a cardiac stent, something that is a temporary fix, and receive $1500.00. The system is crazy!” Who is going to devote time to non-reimbursable treatments?
In senior care, Medicare reimbursement is the pink elephant in the room. Follow the money. Until late last year, evidence-based, disease reversal programs for diabetes and heart disease were not reimbursable though they are shown to prevent disability, save lives and money. Go figure. Who is going to devote time to non-reimbursable treatments? As a consequence of reimbursability, I predict rapid growth in disease reversal programs.

A little known provision of the 2003 Bush/Medicare expansion prohibited government (the largest purchaser of medications) from bargaining on drug pricing. Huh? This act of government munificence to Big Pharma (the pharmaceutical industry) and Congressional malfeasance toward seniors was, by some estimates, a gift equalling a half-TRILLION dollars over the ensuing decade and largely contributes to the Medicare donut hole.
Medicare and the drug coverage gap (donut hole): In 2014, the Medicare drug allowance is $2850. Once that amount is exceeded, people fall into the coverage gap or donut hole. What does that mean? It means they will pay nearly 50% of their retail pharmacy bill for the rest of the year. 
For example: A month’s supply of insulin pens - either mealtime or bedtime - costs nearly $400. If the patient takes both types of insulin (as many do), their pharmacy expenditure for insulin alone costs nearly $800/month. They fall into the donut hole in just 3.5 months. 
As responsible clinicians, we try to switch our patients off all high cost, “designer” drugs that guarantee a dunk-in-donut - only to be accused of being miserly to "save Kaiser money." I’ve seen patients hit the donut hole mid-year with pharmacy bills exceeding $1000 per month thereafter. That’s unaffordable for most. 
Without the ability to negotiate prices on behalf of its citizenry, drug prices in the US remain artificially high, to the detriment of our population. And THAT’S why people buy medications online from Canada and Mexico. But I digress.

Intermission: Lest you think I disapprove of Medicare, let me say this. It is one of two programs responsible for keeping most seniors solvent through the great recession of 2008. It is administered at a fraction of the cost that private companies charge, and over all, it works well. Examples like the Big Pharma bequest rests squarely on broad and unaccountable, Congressional shoulders. A largesse borne by the American medication consumer, er… all of us. Grrr…
Further, Medicare oversight and fraud detection is funded separately by Congress - an appropriation that consistently gets the short-shrift. Hence - Medicare fraud can be very expensive - and again, a cost borne by the taxpayer - natch. Grrr again.

So what does Medicare have to do with dying? The overwhelming majority of Americans who die are elderly and covered by Medicare. In fact, the Congressional Budget Office reports that one-quarter of all Medicare spending occurs in the last year of life. 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. Why? Because, I contend, EoL choices are limited and skewed.

What is Medicare’s position on dying and Death with Dignity? 
“Among patients, one significant segment of the population is precluded from taking part … people covered solely by Medicare, Medicaid or the military health plan, TRICARE. Under the national Assisted Suicide Funding Restriction Act of 1997, it is illegal to use federal funds to cause or help cause someone's death.” (I thought federal funds were used in prisoner executions by lethal injection. Turns out states bear that cost.) In other words, Death with Dignity medications are not reimbursable by Medicare.
Notice that the legislation is entitled the Assisted Suicide Funding Restriction Act.  This from Michael H. White, JD, mediator, attorney and former board member of the Death with Dignity National Center. “A terminally ill person who wishes to have the benefit of all medical resources that are available, or not, has that choice. However, a person who wishes to have the assistance of a physician in the dying process - either due to unremitting pain and suffering or the absence of adequate quality in life - does not have that choice.” We have the right to refuse care but not to end life. So we choose - to the tune of $146.5 billion in 2013.

Michael H. White again, “For a terminally ill person who wishes to end his or her life, the nonviolent choices available in California are (a) terminal sedation - that is, being rendered unconscious by a physician to end unremitting pain and suffering - and withdrawal of food and hydration until death occurs, or (b) electing to cease taking all food and hydration until death occurs, in short, starvation. In either case, a person's discomfort may be palliated by medical support and supervision.”
What does that mean really? In Choice A, the dying person is put into a drug induced sleep until starvation and dehydration ends life. Choice B is the same as Choice A without sedation. Some choice - we treat our pets with more compassion.

One opponent said, “So long as there are bridges and tall buildings from which a dying person can jump, there is no need for a law that would permit a physician to prescribe medication to end a person's life.” Let me reiterate, we treat our pets with more compassion.
White asserts that we would not subject death penalty prisoners to death by starvation or walking the plank from bridge or building. Why then do we limit the legal options of the terminally ill to waiting, starvation, jumping, and guns? 
There is much stigma with suicide and until we shift just the verbiage from Assisted Suicide to Death with Dignity or Right to Die or Assisted Dying, there is little room for dialogue. 

Death with Dignity - On October 27, 1997 Oregon passed the Death with Dignity Act, allowing physicians to prescribe a lethal dose of drugs to certain, terminally ill patients. Often called physician-assisted suicide by opponents, strict criteria for eligibility exists. People must be residents of the state (no EoL vacations), be deemed mentally competent and terminal, with less than six months of life, by two physicians. In Washington state, the request for the cocktail must occur twice verbally, once in writing and repeated over time. In Oregon, the cocktail costs about $400. Guess we don’t need Medicare after all.
Opponents included the American Medical Association, some disability-rights advocates, and more socially conservative religious groups, such as the Roman Catholic Church, Orthodox Jews and evangelical Protestant denominations. 
Widespread fear that abuse would lead to early demise for financial reasons and to end the burden of care have not been substantiated. In its first decade, only 292 terminally ill people availed themselves of the statute. Hardly a fire-sale.
A judges ruling on January 13, 2014 made New Mexico the fifth state in the US to allow terminally ill, mentally competent patients the right-to-die. The five states include Oregon, Washington, Montana, Vermont, and New Mexico.

What about Hospice and a good death? “Hospice is not about how you want to die; its about how you want to live until you die” says Dr. Michael GuntherMaher, Hospice Director at Kaiser Permanente in Sacramento. Well that shifts the context a wee bit; donchya think? 
Currently, to receive hospice care, patients must agree to forego any further attempts at curative treatments. That makes some hesitate, as if enrolling in Hospice is surrender. In fact, in 2011, the national median length of hospice service was a mere 19 days. 
Hospice caregivers are skilled at easing the transition to facing death. “The ideal would be that everybody finds peace with their dying, and that takes time,” says Dr. E. Szmuilowicz of Northwestern University’s Feinberg School of Medicine. “If we don’t give people that time, we are really robbing them of the potential to find some peace.”

CMS is intending to test a new model. It is well known that hospice services can improve the quality of life AND reduce Medicare expenditures. What if patients didn’t have to choose between Hospice and curative treatments? In a multi-year pilot, CMS will test just that in patients with advanced cancer, chronic obstructive pulmonary disease, congestive heart failure and HIV/AIDS. 
Who wouldn’t rather have quality care at home? I foresee a day when that will occur regularly but we’re not there yet, in part due to rules of reimbursement. History shows that hospice care is restricted by the either-or choice at EoL, by fears that hospice care equates to little or no care, that giving in is giving up. Additionally, funding for Hospice care has become progressively circumscribed by increasingly strict criteria.
In short, EoL choices and care are limited by the legalities of one’s resident state, reimbursements, and money. Patients can and do choose from a large menu of lifesaving measures. But when care is futile and its time to face death, the menu is unnecessarily spare. Medications can relieve much pain and suffering while we wait. And if they don't? Its slim pickins.
or at least that’s how it looks from this corner of the ring. 

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.

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.