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News September 2015

Washington Watch

Dying at What Cost – And in Peace or in Pain?

By Alan M. Schlein

“The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist,” Murray argued.

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But opening this up to the roughly 55 million Medicare beneficiaries could make such talks far more common and hopefully far more useful. About three-quarters of the people who die each year in the U.S. are 65 and older, making Medicare the largest insurer at the end of life, according to the Kaiser Family Foundation.

Doctors are different than you and I. They know how to die.  They do not tell family and colleagues to do “everything you can” to save them.

This may surprise you, but doctors often choose less end-of-life care for themselves than the average patient – an important lesson for seniors as they discuss end-of-life care decisions with family members.  In July, the Centers for Medicare and Medicaid Services (CMS), which administers Medicare, announced it will change its longstanding policy and begin reimbursing doctors and other health professionals, for the first time, for talking to patients with advanced stage diseases about their options for treatment.

In addition, Medicare announced it is conducting a five-year, 40-state experiment, allowing hospices to offer end-of-life care and counseling to dying Medicare patients at the same time those patients receive treatment to extend their lives. In the past, patients who are terminally ill must choose one or the other.

In November, 2011, Dr. Ken Murray, a Los Angeles doctor, wrote a powerful essay on the website Zocolo Public Square about the way doctors choose to die, a sharp contrast to how most of their patients do.

The post has since gone viral, and tens of thousands of people have likely read it. But for any senior or family member considering a hospital stay, or thinking about end-of-life decisions including living wills or advanced care directives, this is must reading. http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/

Doctor Murray argues that doctors know too much about the futility of aggressive end-of-life treatment to subject themselves to it. While his argument is anecdotal, a study, published in 2008 in The Archives of Internal Medicine of more than 800 physicians who graduated from Johns Hopkins University between 1948 and 1964, gives statistical credence to his contention. Most of these doctors had reached their late 60s and 70s, so questions about end-of-life treatment were not purely hypothetical.

The Hopkins study asked doctors what treatment they would accept if they’d suffered irreversible brain damage that left them unable to speak or recognize people but was not terminal. The doctors overwhelmingly said they would decline cardiopulmonary resuscitation (CPR), feeding tubes and a host of other common interventions. Doctors often choose no CPR, no feeding tubes and no other life saving measures, Murray argued, to be as comfortable as possible with the minimum amount of intervention. Many choose to die at home, because they understand that much of what is done at hospitals for patients is done for people who are likely going to die anyway.

Doctors “don’t die like the rest of us,” Murray argued. “What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.”

“Of course, doctors don’t want to die; they want to live,” Murray argued. “But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen — that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right),” Murray argued.

“Almost all medical professionals have seen too much of what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously-ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist,” Murray argued.

The numbers on CPR are actually eye-opening and something everyone needs to consider before they need to deal with this in an emergency situation.

CPR has a success rate of about 8%, with only 3% of people receiving it going on to have a near-normal quality of life, according to a 2010 study of more than 95,000 cases of CPR in Japan. That study found that only 8% of patients survived for more than a month and of those, only about 3% led normal lives post-code. Approximately 3% were in a vegetative state and about 2% were alive with a “poor” outcome.

What we all think is what we see on television, where most patients are given CPR and nearly all of them recover, and many go on to thwart a terrorist attack in the same 60-minute episode. The reality is that a tiny percentage go on to have a near-normal quality of life. No percentages available on how many save us from terrorist attacks.

A May 2014, Stanford University study of doctors finds that almost 90 percent of doctors surveyed said they would forgo resuscitation and aggressive treatment if facing a terminal illness. Or as Murray’s article points out, what many of us wish we could have when we die – being comfortable and in control, having a sense of closure, making the most of relationships and having family involved in care. As Murray argued, “Hospitals today provide few of these qualities.”

 

New Policies for Medicare

All of this increases the importance of Medicare’s new policies about doctors getting reimbursed for counseling related to end-of-life care for terminal patients.

Just six years ago, a similar proposal for Medicare to cover end-of-life counseling touched off a political uproar nearly sinking President Obama’s Affordable Care Act. That’s when former Alaska Republican Gov. Sarah Palin’s accusation that this kind of counseling could lead to government-sponsored “death panels” came to light and the issue remained politically radioactive long after Obamacare went into effect.

"This issue has been mischaracterized in the past and it is time to facilitate patient choices about advance care planning," said Andrew Gurman, the incoming president of the American Medical Association.

Under Medicare’s new policy, this end-of-life counseling would be entirely voluntary for patients. Some doctors already have such conversations with their patients without billing extra. Certain private insurers have begun offering reimbursement. But opening this up to the roughly 55 million Medicare beneficiaries could make such talks far more common and hopefully far more useful. About three-quarters of the people who die each year in the U.S. are 65 and older, making Medicare the largest insurer at the end of life, according to the Kaiser Family Foundation.

While the firestorm over end-of-life discussions has been less volatile since Medicare’s announcement, the new policy that 141 hospices in 40 states will offer end-of-life care and counseling to dying Medicare patients at the same time those patients receive treatment to extend their lives has been widely praised.

Hospice services typically involve a team of doctors, nurses, social workers, bereavement counselors, aides and volunteers who address the physical, social, emotional and spiritual needs of dying patients and their families.

The hope is that by allowing people to pursue both paths, more will choose to get hospice services that will improve the quality of their remaining days and also reduce high cost of end-of-life care. During the experiment, Medicare will assess whether more people use hospice care, the quality of the care, whether patients and their families are satisfied with it, and the costs.

While hospice care has grown dramatically over its 40-year history of cancer patients enrolled in Medicare, who died in 2013, only 47 percent had used hospice services, according to the latest data available from the Medicare Payment Advisory Commission, the nonpartisan legislative branch agency that provides analysis on the Medicare program to Congress. Many hospice and palliative care experts say more people would choose hospice care were it not for Medicare’s requirement that patients give up potentially life-extending treatments.

If it is successful, it likely will lead to a similar shift by Medicaid, the joint federal-state health insurance program for the poor, and by private insurers, providing access to millions more people. The policy change, to take effect Jan. 1, was tucked into a massive regulation on payments for doctors released in July.

 

Receiving More Care than You Want?

Conversations about end-of-life care are difficult. So even though many folks have living wills, advance directives or have discussions with family members in advance, those plans often go awry. A new study, published recently in the JAMA Oncology, the journal of the American Medical Association, finds that many people still receive more intensive care than they would have wished for. This demonstrates the increased need for clear careful discussions with family members in advance of a crisis.

The JAMA study, which looked at the family responses of almost 2,000 families who died between 2000 and 2012, examined how frequently patients had signed durable power of attorney documents or living wills or participated in conversations about their end-of-life preferences.

A durable power of attorney allows consumers to appoint someone to make health care decisions for them if patients are unable to do so. A living will describe the types of medical care people wish to receive (or don’t wish to receive) if they’re incapacitated. Neither requires a lawyer, and forms are often available online.

Researchers then looked at the actual medical care those patients received at the end of their life. While there were increases in the use of durable power of attorney assignment, usually called a health care proxy, there were slight declines in the number of people who used living wills and in end-of-life discussions.

But the surprise was the proportion of patients who were reported to have received “all care possible” at the end of their lives increased substantially over the study period, from 7% to 58% , even though such intensive treatment may have been counter to their stated wishes.

Dr. Amol Narang, a radiation oncologist at Johns Hopkins School of Medicine and the lead author of the study, told Kaiser Health News, that simply signing a document isn’t enough. The key is a clear discussion with family and friends about end-of-life preferences.

“Patients may have signed that power of attorney, but if they haven’t discussed their preferences with that person the proxy may default to ‘all care necessary,'” Narang said. In other words, without clear guidance, whoever has your health care proxy may choose to err on the safe side and approve more care rather than limit or withhold it.

So ask yourself some key questions as you ponder these difficult issues.

  • What is the quality of life that is unacceptable to you?
  • Would you want every measure taken to treat an illness or injury even if it meant enduring extreme pain with little likelihood of improvement?
  • Or would you rather forgo such intensive treatment and be kept comfortable instead?

 

[Also contributing to this column were the New York Times, AP, Stateline, Science-based Medicine, KPCC and KQED, Modern Healthcare, Politico, LA Times and Kaiser Health News.]

Alan M. Schlein wants to die at home, surrounded by my loved ones, without CPR, feeding tubes and to be as comfortable as possible with the minimum amount of intervention and without extraordinary measures. Pain medicines, however, are encouraged.

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