End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Health Care Reform

Physicians debate whether patients need to know they’re dying

By Melissa Healy, Los Angeles Times
April 25, 2013

In the days when American physicians dispensed oracular commands and their judgments were rarely questioned, a doctor could take it upon himself with few ethical qualms to keep from a patient the bad news of a terminal diagnosis.

For better or worse, those days may be well behind us. But physicians have not ceased debating one of the stickiest and most universal ethical quandaries of medical practice: How, when and why does one inform a patient that he or she is dying? The latest evidence of that ongoing discussion was published Wednesday in the British Medical Journal.

The latest question in the journal’s “Head to Head” feature, “Do patients need to know they are terminally ill?,” essentially pits one side’s reasonable arguments that “we’re all dying” and “you never really know when and of what a patient will die” against another side’s equally compelling assertions that “knowledge allows better decisions” and “a patient can still have hope — to live to see a daughter married or achieve a cherished goal or to die a peaceful death at home.” More

“Make Your Plan” Urges End-of-Life Care Advocacy Organization

by Compassion & Choices Staff
April 10, 2013

National Healthcare Decisions Day is April 16th

Portland, OR – With only one in four Americans stating their end-of-life care decisions before they are incapacitated, Compassion & Choices today asked all Americans to “Make Your Plan” for National Healthcare Decisions Day (NHDD), April 16. The importance of planning ahead was evident in the February 6 edition of The Journal of the American Medical Association, which reported that 26% of Medicare beneficiaries spent part of their last month of life in an intensive care unit — an increase from a decade ago.

The organization offers resources free of charge, including advance directive forms for every state and tools to stimulate discussion and aid decision-making. Forms can be downloaded at compassionandchoices.org or ordered by phone at 800.247.7421.

Compassion & Choices also announced the availability of exclusive content: a dementia provision for advance directives. According to a report released last month by the Alzheimer’s Association, Alzheimer’s deaths continue to rise — increasing 68 percent from 2000-2010. The new provision can be added to any advance directive or living will to advise physicians and family of the wishes of a patient with Alzheimer’s disease or other forms of dementia.

President Barbara Coombs Lee explained why the dementia provision is so important. “Most advance directives take effect only when a person is unable to make healthcare decisions and is either ‘permanently unconscious’ or ‘terminally ill,’” she said. “But what of the situation in which a person suffers from severe dementia but is neither unconscious nor dying? Without this provision in advance directives, families and doctors have no sure guide for the care of the estimated 450,000 people who will die this year with Alzheimer’s.”

Compassion & Choices has launched a social media campaign featuring bold graphics and the taglines “Ask me” and “Tell me” to prompt discussion of advance care planning, sharing the graphics from its Facebook page: facebook.com/CompassionandChoices.

Completing advance directives is the first step toward patients receiving the care they want – and only the care they want. Compassion & Choices is conducting a national campaign to stop unwanted medical treatment so that healthcare providers and institutions take all steps to honor patients’ wishes. The campaign petition can be found here: tinyurl.com/umt-petition

For more information please visit www.compassionandchoices.org

Compassion & Choices is a nonprofit organization working to improve care and expand choice at the end of life. We support, educate and advocate.

Take Action in Connecticut: Attend the Public Hearing

BCL in CT

We have had great success in this year’s legislative session in Connecticut with the introduction of “An Act Concerning Compassionate Aid in Dying for the Terminally Ill“.

The next step is a public hearing, where we all must make our voices heard. That hearing will take place:

Wednesday, March 20, 2013 10:30 a.m.
Legislative Office Building — Room 1D
300 Capitol Avenue, Hartford

The proposed Connecticut law is similar to laws passed in Oregon and Washington state. It offers dignity at the end of life and gives terminally ill patients in great pain the choice to ease and end their suffering. The law includes key safeguards: The patient must have six months or less to live and be deemed mentally competent.

It guarantees we — not the government — will make our own end-of-life decisions. Furthermore, as we know, “Death with Dignity” laws have worked without abuse with the same safeguards the Connecticut law would have.

BUT we still have a lot of work to do.

Right now, we want legislators to hear from Connecticut citizens like you. If you can attend the hearing, contact Tim Appleton today at [email protected] or by calling 860.922.1988 to help send a message to legislators during the public hearing.

We know our opponents will be there, so please come show your support as well.

You can also help by following this link to contact Connecticut lawmakers. It’s quick, easy and impactful!

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, [email protected]

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?”