End-of-Life Choice, Palliative Care and Counseling

palliative care

Aging in America Conference Features Panel on Rise of Unwanted Patient Care

What:  

Aging in America Conference panel sponsored by the Compassion and Choices: “What is Patient- and Family-Centered Care and What Happens When We Fail to Prevent It?” Patient-centered care should not include unwanted medical treatment and unnecessary suffering. Yet millions of Americans with advanced illnesses or who are terminally ill:

  • Suffer needlessly from undertreated pain and other agonizing symptoms;
  • Undergo pointless and costly invasive tests and treatments, often in their last days and hours; and
  • Have their treatment preferences or advance directives ignored or overridden by healthcare professionals and others.

Why:   

A new study published in Feb. in the Journal of the American Medical Association examining Medicare claims data found that between the years 2000 and 2009 treatment in acute care hospitals decreased while the usage of intensive care units (ICU) and healthcare transitions the last month of life increased. An accompanying Journal of American Medical Association editorial, “Changes in End-of-Life Care Over the Past Decade More Not Better,” concluded: “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.”

Who:  

Mickey MacIntyre, Chief Program Officer, Compassion & Choices (read his testimony about how unwanted medical treatment at life’s end causes needless costly suffering before the Institute of Medicine’s Committee on Transforming End-of-Life Cares);
Lynn Feinberg, MSW, Sr. Strategic Policy Advisor, AARP Public Policy Institute;
Brian Lindberg, MMHS, Exec. Dir., Consumer Coalition for Quality Health Care;
Andrew MacPherson, Director of Government Affairs at Jennings Policy Strategies Inc.

Where:

Crystal C (West Tower/Green Level), Hyatt Regency Chicago, 151 E. Wacker Dr.

When:  

Friday, March 15, 1pm-2pm CT. If you cannot attend panel but want an interview Tuesday (March 12) Wednesday (March 13), Thursday (March 14) or Friday (March 15) with Compassion & Choices Chief Program Officer Mickey MacIntyre, please contact Sean Crowley: 202-550-6524, seancrowley57@gmail.com.

How:   

If you want to attend panel, but have not registered yet for the Aging in America Conference, please contact Jutka Mándoki: jutkam@asaging.org, 312-239-4834.

Intense Treatment in the Last Month of Life Is Rising

by Barbara Coombs Lee
March 4, 2013

One Question Can Stop End-of-Life Torture

Several weeks ago Brown University’s Dr. Joan Teno and her Dartmouth colleagues published a study on end-of-life care in the Journal of the American Medical Association. They looked at the records of almost 850,000 Medicare beneficiaries who died between 2000 – 2009, and first found good news on hospice utilization. A closer look revealed the bad news. I believe healthcare consumers could escape the intractable problem they discovered with one timely question.

First the good news: The percentage of our nation’s elders dying under hospice care doubled in ten years, from 21.6% to 42.3%. If patients close to death received more of the comfort-directed care of hospice and less of the highly invasive, painful and burdensome treatment of intensive care units (ICUs), that would be very good news indeed. Needless suffering would have diminished.

But when the investigators looked at the period immediately preceding referral to hospice, they found a picture of torture and chaos. More people than ever received intense interventions, and the median number of disruptive moves from one institution to another grew from 2.1 to 3.1. ICU stays in the last month of life increased from 24% to 29% and ventilator use also increased, from 8% to 9%. Very sick elders, just weeks from death, are still subjected to intensive and aggressive treatments. Doctors are apparently using more machines and tubes than ever, redoubling efforts to turn around a final medical crisis or forestall death.

The data indicates that when doctors finally accept the inevitable, the end is imminent. 28% of patients received the comfort and care of hospice less than four days. This is a travesty. I would categorize such a last-minute, desperate transfer of a patient to hospice services as “dumping.”  These unfortunate patients didn’t receive comfort care instead of medical tortures. They received the maximum allotment of technological interventions and then got shunted to hospice to die.

Such transfers come too late for a family to realize the enormous relief and peace of mind that comes with knowing a loved one’s comfort comes first.  It’s too late for hospice social workers to do a thorough assessment of a patient and family’s social, emotional and spiritual needs. It’s barely enough time to administer and titrate medications for maximum relief of pain, anxiety, breathlessness and other distressing symptoms.

I would venture a guess that most of the patients in this study who suffered stays in an intensive care unit immediately before transfer to hospice had advance directives. (61% of such patients do.)  I would further guess that most of those advance directives said the patient wanted to limit life-sustaining therapies like CPR, ventilators and other rescue treatments if they were terminally ill. (Most people who fill out advance directives decline interventions if they are dying)

What is going on here? Why were these dying patients treated in violation of their stated preferences and the instructions on their advance directive?

Here’s one reason: The advance directive says, essentially, “no life-sustaining treatment if I am dying.”  But left to their own habits and sensibilities, doctors define “dying” very, very narrowly. So long as some technology, futile or not, remains in Medicine’s bag of tricks, the patient is not “dying.” In this sense, doctors are like a procrastinator putting a task off until tomorrow and believing that, technically speaking, “tomorrow” never comes.

Educators and health policy gurus have spent decades and hundreds of millions trying to turn physician behavior around. This latest study reveals not only abject failure, but lost ground as well. It’s up to the people — those approaching the end of life and those who love them — to prevent medical habit from stealing a peaceful death.

We can change medical habit by applying a reasonable definition of “dying” for ourselves.  We can save ourselves from torture by getting doctors to admit when we are likely to die within 6 months with or without treatment, or are unlikely to survive a hospitalization. That admission should give force to patients’ preferences for the end of life, or to the advance directive if they cannot speak.  But it’s up to us to call the question.

I believe we must muster the courage to ask directly, “Doctor, am I dying?” “Is my mother, father, sister, spouse, or other loved one — dying?”  “Has the time of our careful planning arrived?  Shall we avoid the trap of acting as though the inevitable will never come? Because if scientific calculations say I am likely to die during this hospitalization, I would rather die at home. If the odds are intensive care offers nothing but prolonged suffering, please refer me to hospice now.”

Facing pointed questions like this, doctors will almost always tell the truth.  They are very bad at starting a serious conversation about the end of life, but they can usually participate if they know a patient or family takes end-of-life planning seriously.

Sadly, we must take it upon ourselves to avoid being one of Dr. Teno’s dismal statistics. If the end of a battle with cancer, chronic lung disease or dementia seems to be approaching, prepare yourself to ask the crucial question BEFORE a hospital admission.  Ask it in the medical office. Ask it in the emergency room. Practice asking it before you actually have to utter the words.  “Doctor, am I dying?”

 

Why Don’t Doctors Talk About Death With Their Patients?

by James C. Salwitz, MD
KevinMD
February 21, 2013

The failure of doctors to talk to their patients about end of life decisions perplexes me.  This gap in vital communication results in poor care, uncontrolled pain, futile treatment and death in hospital or nursing home, where no patient wants to be.  Certainly, for oncologists, every patient they see is concerned about dying and by not opening the topic it leaves each isolated.

I have generally taught my students that this failure results from a “culture of cure.”  Doctors and patients focus so hard on treatment, whether its fighting cancer, heart disease or even Alzheimer’s, that they ignore the reality that all life eventually ends.  Lost is the opportunity to plan for end-of-life needs, which can deny the patient and family a gentle passing.  Doctors falsely see death as the great enemy, instead of suffering and disease. Often the illogical emphasis on cure at any cost is key to poor end-of-life communication. More

Quantity Vs. Quality Of Life

by Tory Zellick
Huffington Post
February 13, 2013

I am no stranger to the quantity-versus-quality of life debate. When my mother was diagnosed with Stage IV metastatic breast cancer, my family quickly learned to play the game of weighing options and picking treatments, according to a risk/benefit analysis. We always took into account whether a given treatment would improve my mother’s comfort and enjoyment, sustain my mother’s life as-is or compromise what time she had left. For the most part, we opted for palliative care treatments that maintained my mother’s quality of life while potentially extending her time with us.

Amy Berman, senior program officer at the John A. Hartford Foundation, understands this choice very well. At 51, she too was diagnosed with stage IV metastatic breast cancer — in her case, after finding a rough, red spot on her breast. As most women in her situation would do, Berman contacted her general practitioner and had a mammogram, leading to a biopsy, which in turn confirmed the diagnosis of inflammatory breast cancer.

Knowing that a stage IV diagnosis is a terminal one, Berman chose to find treatment options with the least amount of side effects and, therefore, negative impact on her life. Having watched her own grandmother suffer a long and debilitating battle with Alzheimer’s, Berman was clear about her path forward: “I saw what it was like to have a long life that was not a good life,” she recalls. “I wanted to have as much quality of life as possible and didn’t want to go to battle if there was no reason to go to battle.” More

What You Need to Know About Palliative Care

by Philip Moeller
U.S. News & World Report
January 23, 2012

Even the healthiest senior may eventually face serious illness and, of course, death. Seniors know this, and so do their family members and other loved ones. Despite this certainty, we are seldom prepared for late-stage and end-of-life illnesses. And we are even less comfortable talking about them.

Done right, palliative care is an enormous game-changer. It brings openness and fresh air to these topics. It can deliver a range of medical, psychological, social-support, and even spiritual services to patients and family members. It can provide all these resources without costing more money and, in some cases, can even save money by helping people receive care in their homes and not in more costly hospitals. Ideally, it should be available for a broad range of serious but not necessarily life-threatening health conditions.

Most importantly, palliative care and hospice, for those who are near the end of life, have been proven to extend lives and improve the quality of the time remaining for patients and their families. Further, we know what works and how to provide this care. Odds are, however, you have never heard of palliative care or if you have, you aren’t really sure what it means. More