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 CMS.gov, 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.