End-of-Life Choice, Palliative Care and Counseling


Care at the End of Life

The New York Times
November 24, 2012

Three years ago, at the height of the debate over health care reform, there was an uproar over a voluntary provision that encouraged doctors to discuss with Medicare patients the kinds of treatments they would want as they neared the end of life. That thoughtful provision was left out of the final bill after right-wing commentators and Republican politicians denounced it falsely as a step toward euthanasia and “death panels.”

Fortunately, advance planning for end-of-life decisions has been going on for years and is continuing to spread despite the demagogy on the issue in 2009. There is good evidence that, done properly, it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.

Many people sign living wills that specify the care they want as death nears and powers of attorney that authorize relatives or trusted surrogates to make decisions if they become incapacitated. Those standard devices have been greatly improved in recent years by adding medical orders signed by a doctor — known as Physician Orders for Life Sustaining Treatment, or POLST — to ensure that a patient’s wishes are followed, and not misplaced or too vague for family members to be sure what a comatose patient would want.

Fifteen states, including New York, have already enacted laws or regulations to authorize use of these forms. Similar efforts are under development in another 28 states. The laws generally allow medical institutions to decide whether to offer the forms and always allow patients and families to decide voluntarily whether to use them.

With these physician orders, the doctor, or in some states a nurse practitioner or physician assistant, leads conversations with patients, family members and surrogates to determine whether a patient with advanced illness wants aggressive life-sustaining treatment, a limited intervention or simply palliative or hospice care. More

The Facts on End-of-Life Care Programs

by Terri Schmidt
Milwaukee Journal Sentinel
October 23, 2012

In 2001, my frail 94-year-old grandmother – a lifelong Wisconsinite – died in a way consistent with her wishes. But it wasn’t easy. It required relentless advocacy by her daughter, who signed “Do Not Resuscitate” paperwork three separate times in one week after my grandmother fell and was taken to the hospital with a serious brain injury.

My grandmother’s loving Brookfield foster home wanted her back with hospice care. Her daughter needed to sign paperwork to confirm her desire to avoid hospitalization and die at home – first at the hospital, then just for the ambulance ride home and again for the hospice admission.

All of this could have been avoided if a system had been in place that made it possible for health professionals to follow a seriously ill patient’s wishes when transferred from one facility to another. With a system in place, patients with advanced illness might have thoughtful conversations with doctors and family about treatments they do or do not want, complete advance directives and appoint trusted loved ones as their health care decision-makers when they cannot speak for themselves. More

Boomers Want Control of Their End-of-Life Care

By Jonathan Walters
September 28, 2012

Assisted suicide. Euthanasia. Death panels. Rationed health care.

There’s nothing like a well-chosen phrase to inflame talk about end-of-life care — how the health-care system cares for those who are in the last stages of a terminal illness and how much control patients and their families have over that process.

It can be an emotional and divisive issue, and for lawmakers, a dangerous business. That’s certainly something President Obama quickly learned when a provision in the Affordable Care Act (ACA) that encouraged doctors to engage patients in discussions about end-of-life care quickly deteriorated into a nationwide war of words over whether such one-on-one discussions between patient and physician would result in “death panels” determining who should receive care.

But with America rapidly aging, the subject of end-of-life care isn’t going to go away. It has the attention of any legislator or government official trying to make sense of health-care budgets in general and Medicare expenditures in particular. That’s because in their last year of life, older adults consume more than a quarter of Medicare’s expenditures, costing more than six times as much as other beneficiaries. It also has the attention of hospital officials. Under the ACA, hospitals will be penalized by Medicare for high readmission rates. That means there will be more focus on avoiding the ping-ponging of terminally ill patients that often takes place between nursing homes and hospitals as people near the end of their lives.

Meanwhile, an increasing percentage of Americans say they want more control over how they will be treated should they become terminally ill. Faced with the mechanistic environment of hospital intensive care units, many older patients say they prefer to die at home, surrounded not by machines but by their family. Others want every option explored, every high-tech trick tried to prolong their lives, even if they are unconscious.

Today, the discussion over end-of-life care is alive and well — but not on a national level. “It’s pretty quiet right now, and has been since 2009 and the whole death panel debate,” says John Carney, president and CEO of the Center for Practical Bioethics, formed in 1984 to parse out complicated ethical issues around medicine and medical research, including issues like end-of-life care. Rather, the debate and press toward a political solution are currently taking place at the state level. There, policymakers and advocacy groups are managing to defuse the raw emotional responses that national, partisan-fueled battles elicited when the ACA was being debated.

The reason for that is straightforward. Rather than pursuing the “death with dignity” approach to end-of-life decisions — which immediately inflames the right-to-life lobby — a low-key movement has evolved in the states. This movement is focused on giving patients facing tough decisions about end-of-life care more say in what medicine and medical procedures they want or don’t want.

If advocates for more rational and patient-centered end-of-life care can avoid the specter of death panels and health-care rationing, there’s the real possibility of progress. Dr. Susan Tolle, who practices general medicine in Oregon and serves as director of the Center for Ethics in Health Care at the Oregon Health & Sciences University (OHSU), says, “When people are using language like ‘death panels,’ there’s more emotion and fear than if you say you want to honor the wishes of this individual.” More

5 Reasons I Won’t Die the Way My Mother Did

By Erica Manfred
Next Avenue
September 21, 2012

When a parent dies, it’s common for surviving children to have a raft of regrets, from not spending more time with Dad to not telling Mom you loved her to failing to do more for them in their final years. Today there’s often one other regret in the mix — not protecting a parent from invasive end-of-life interventions.

Few of us die in our own beds now. Modern medicine keeps many of us living longer, and then some of us die by inches, in an ICU or on a ventilator, sedated or in excruciating pain, while others fade slowly with Alzheimer’s disease or other dementias. When my mother died 15 years ago, after much unnecessary suffering, I determined to keep her fate from becoming mine.

Mom was an extremely healthy and active woman who, until age 85, had few medical problems besides arthritis. In her mid-80s she displayed some memory loss, though nothing that inhibited her lifestyle. I suspected she was developing Alzheimer’s, as her brother had, but that she had many active years left. She also had a heart valve that needed replacing or she’d face serious restrictions of her daily activities, along with an increased likelihood of a heart attack.

She wanted the surgery, and it was a success. But then she had an allergic, near-fatal reaction to the valve, after which she went rapidly downhill cognitively and became unable to take care of herself and severely depressed. Two years later, when her kidneys failed, her doctor suggested dialysis, which would have gone against her living will specifying no further invasive treatments. I arrived at her Florida home just in time to refuse the dialysis. She died peacefully at home, under hospice care, two weeks later. We had spoken about her wishes, and I knew that’s what she wanted.

After my mom passed away, I realized that I had to begin to make hard decisions about my own death, when I was still relatively young and healthy, to avoid an equally drawn-out end. Jane Brody, a New York Times health columnist and author of Jane Brody’s Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life, helped me craft these five steps, designed to increase one’s chances of a dignified death (although there are, of course, no guarantees): More

Oregon End-of-Life Care Program Spreads, Report Finds

By Nick Budnick
The Oregonian
September 20, 2012

An Oregon effort to ensure people near the end of life receive the care they want continues to spread across the country, according to a new report.

The Oregon Physicians Orders for Life Sustaining Treatment (POLST) program, created two decades ago and put into state law by the Legislature in 2009, has been adopted by 15 states and is under consideration in 28 others, according to the report, prepared by the Retirement Research Foundation and the Archstone Foundation.

That’s an increase just over last year. Then, the program, which includes an electronic registry of detailed end-of-life care instructions, had been adopted in only 12 states.

The report, which advises other states on lessons learned, will formally be released Monday, Oct. 1, but a draft copy has already been released by Oregon Health & Science University, which houses the POLST program.

It recaps the accomplishments of the program, which has been used by 88,000 Oregonians. On average, the registry receives 3,500 to 4,000 new medical-instruction forms each month. More