Jun 02, 2013

Vermont recently approved historic legislation allowing aid in dying, sometimes referred to as “death with dignity.”

Its The Patient Choice at End of Life Act represents a tremendous advance for citizens of that state and the entire movement to expand end-of-life choice. Although widely covered in media on the East Coast, this important development received little attention in Hawaii.

Aid in dying allows terminally ill, mentally competent adult patients to request, and physicians to prescribe, life-ending medication when they their suffering unbearable to bring about a peaceful death.

Vermont is the first state to enact such a law legislatively. Oregon and Washington passed death-with-dig- nity acts by referendum, while the Montana Supreme Court ruled in 2009 that physicians there may provide aid in dying.

The new Vermont law, which the governor signed on May 20, contains provisions similar to Oregon’s Death with Dignity Act and policies in Hawaii. It follows Oregon’s model, but after three years, those requirements expire, at which time professional practice standards will prevail, as they do in Hawaii.

Hawaii is in the enviable position of having aid in dying as a standard medical practice. Two years ago, Compassion & Choices, the largest and most comprehensive choice-in-dying organization in the U.S., analyzed our state’s statutes and determined that a constellation of Hawaii laws gives our citizens broad autonomy over end-of-life decisions, including aid in dying.

Hawaii does not need legislation to permit this practice. It already trusts doctors to set best practices for aid in dying and other end-of-life procedures. Terminally ill individuals are able to make these very personal decisions in consultation with family, doctors and their own personal and spiritual beliefs. Patients should not have to suffer intolerably at the end of their lives, and Hawaii doctors can help.

In 1994, Oregon enacted its Death with Dignity Act. A requirement of the act is for the state to collect information on compliance and to issue annual reports. Recently, the state released its 2012 report that included 15 years’ worth of data. The data proves the law works as intended, and without the abuses some originally predicted. Statistics show the practice of aid in dying is rarely used, but having it provides comfort to terminally ill individuals.

For example, in 2012, 115 Oregonians had prescriptions written, and 77 hastened their deaths. This was less than 0.2 percent of all deaths in that state.

Compassion & Choices Hawaii maintains strictly confidential records on all its clients. Once someone contacts our toll-free number, a counselor returns the call and performs an assessment. We recommend that terminally ill patients be admitted to hospice, and if the patient requests aid in dying, the counselor will make the referral to a doctor who, after reviewing all of the medical records and scans, may be willing to write a prescription for life-ending medication.

Doctors in Hawaii practice aid in dying now, utilizing best medical practices. Prescriptions are being written and, consistent with the Oregon statistics, rarely ingested — though the peace of mind and comfort that prescriptions can provide is invaluable.

Compassion & Choices Hawaii helps people plan for and achieve a good death. We work to change attitudes, practices and policies so that every person can access the information and options they need to have more control and comfort at the end of life.

National Healthcare Decisions Day is April 16^th

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.

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.

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?”

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.

Recently I have been considering a slightly different perspective on this problem, based in the works of psychoanalysts, Sigmund Freud and Otto Rank, and how they saw human personality.  They proposed that man is, in a sense, a demi-god.  Half god and half-animal.  By god, they did not mean infinite and all-powerful.  Rather they observed that man has characteristics that are god-like and therefore unique among all creatures.

These god-like traits include the ability to imagine something in the abstract and then make it happen.  For example, one can dream of a two-floor red house, and then build it or envision a five layer chocolate cake and then bake it. Second, man can, in his mind, travel to any time in the future or the past, including the world before or after his life. He can also move his mind to any place in the Universe that he imagines.  Finally, at the most basic level, man is self-aware of his own existence and mortality. As we understand life on this planet, these are remarkable and special god-like abilities.

On the other hand, man is an animal. He is born, grows, can be injured, ages, and gets sick.  He eats, has sex, shivers when a frigid wind blows and has to move bowels and urine. Finally, eventually, the animal that is man dies.

Psychoanalysts believe that emotional trauma in human life is because man is not really a god and is something more than just an animal. He is a demi-god and being a demi-god is hard.  He can create and appreciate goodness, enjoy the wonder and awe of each day; teach, learn, and dream, but at the same time, he can see into the future and knows his fate.  His mind can conceive flying through the air, staying awake for days or living to be 10,000, but he is denied by the limitations of his flesh.  This results in life long stress and in order to cope man uses various psychological strategies, including repression and denial, to focus on each day and each moment and not go truly mad.

When someone becomes ill with a life threatening illness such as cancer, their ability to deny the animal part of their existence may collapse.  Suddenly they are less god than ailing beast. This can cause terrible anxiety, confusion and depression, as their personality is threatened by physical deterioration and critical coping mechanisms fail.  At these critical times, the support of a physician who understands the core balance of the human condition can be most valuable.

However, it seems to me that doctors do not talk about death to their patients, not because they do not care, but because doctors do not know how to deal with the god, they only understand the animal. They are scientists who base decisions on anatomy, physiology and chemistry, which are the building blocks of the biological body.  Even psychiatrists talk about chemical imbalances causing depression.

Doctors receive almost no training on the mechanisms, drives and weaknesses of the mind, where-in lies the god-like powers of man.  Like veterinarians who are unable to talk to their patients, doctors continue to focus on the body and despite their best efforts, do not offer desperately needed connection and support.  Paradoxically in their efforts to heal, they drive the body to a point that causes unneeded suffering.

As long as the sole focus of physicians is on the animal body of man, they will have great difficulty having the kind of vital discussions needed to assist their patients at the end-of-life.  On the other hand, this offers a nearly infinite opportunity to reach out to the hearts of their patients. By connecting and supporting the primary emotional needs of the demi-god soul, physicians can help patients to live better.  This will require not only physician awareness of the possibilities, but training about drives and coping mechanisms.  Medical education needs to recognize that by understanding the primal needs of patients, and the complex psychic battles which each of us face, doctors can help provide quality life, even at its end.