End-of-Life Choice, Palliative Care and Counseling

Posts TaggedAdvanced Directive

House Passes Bill With Advance Care Planning Provision

Historic Legislation Passes

Washington, DC
November 7, 2009

Rep. Earl Blumenauer tonight announced the Affordable Health Care for America Act (H.R. 3962) passed the House by a vote of 220-215. The bill provides advance care planning, a provision Blumenauer authored.

The advance care planning provision will help families better prepare and understand their loved ones’ preferences for end of life care so they are not confronted with these difficult medical decisions in the midst of an emergency. The provision extends Medicare coverage to cover the cost of patients voluntarily speaking with their doctors about their values and preferences regarding end-of-life care.

Following is a statement from Rep. Blumenauer:

“Tonight I voted for every Oregonian who has faced bankruptcy when they’ve lost their care or has been denied coverage because of a pre-existing condition. Tonight, I voted to protect every Oregonian who has health insurance but sees their costs rising every year.

“Passage of the Affordable Health Care for America Act marks the most important single step in 100 years in addressing the health care needs of American families.  For the first time, the US government has dealt comprehensively with the entire health care system.

“I’m pleased we were successful in the incorporation of major reforms, improving care for all Americans while strengthening the position of Oregon medical care providers.

“This critical milestone, while historic, signals more hard work ahead to get the bill to the President’s desk.  I will work to strengthen the reforms while fighting to lower costs to make health care more affordable for families and the federal treasury.

“We must then be prepared to keep working to implement this sweeping change.  But tonight we should all pause to celebrate this moment in history.”

Visit Rep. Blumenauer’s website for more information on the Affordable Health Care for Americans Act.

New Study Finds End-of-Life Counseling Improves Quality of Life for Patients

 A new study reported in the current issues of the Journal of the American Medical Association (JAMA) found that patients and their families benefit from having end-of-life counseling. The study showed that offering such care to dying cancer patients improved their mood and quality of life. The patients who got the counseling also lived longer, by more than five months on average. “This study confirms the benefits of end-of-life counseling, as have other studies. It’s shameful that opponents suggest that such counseling is harmful,” said Compassion & Choices President Barbara Coombs Lee.

The new study involved 322 patients in New Hampshire and Vermont who had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care. The study showed that the patients who got the counseling scored higher on quality of life and mood measures than patients who did not.

“Recently, an idea took hold that it’s highly dangerous and tyrannical to encourage
doctors to talk with patients about what kind of treatments they would want if they were
terminally ill and unable to speak for themselves. This notion is false. It’s time to admit
that talking about death won’t kill you, but not talking about it may increase unnecessary
suffering,” said Coombs Lee.



Hello! We are Mortal! Grow Up and Plan Accordingly!

The Senate Finance Committee may strike end-of-life consultation reimbursement from their version of the health care bill, so maybe the hysteria will die down. But it’s sure to rise again if the provision survives in the House version. Will Congressional leaders summon the courage to deliver an adult response or cave in to hysterical attacks?

It’s remarkable how easy it’s been to gin up a frenzy of fear and anger with scary messages that remind people death is inevitable. Most politicians say they support advance directives for end-of-life planning and encourage their use. At least they did until a few days ago. That’s when the idea took hold that it’s highly dangerous and tyrannical to encourage doctors to talk with patients about what kind of treatments they would want if they were terminally ill and unable to speak for themselves. That’s why the provision to reimburse doctors for the consultation can’t be part of health insurance reform. Apparently this would be the first step to a Nazi regime, where doctors somehow profit from euthanizing their paying patients and panels meet to decree the death of granny and disabled children.

The national dialogue leaped from modest proposal to outrageous hyperbole so fast it’s clear something profound and quite apart from advance directive consultation was at work. International professionals in end-of-life counseling joke that in America people think death is optional. It certainly seems true, to judge by the public’s tantrum after being reminded it ain’t so.

Hello America! We are all mortal! It’s our fate. Adults know this in their hearts and the wisest among us live every day conscious of life’s impermanence. A mature society would have handled this differently.

One of my favorite poets, Edna St. Vincent Millay, wrote, “Childhood is the kingdom where no one ever dies.” Apparently that’s the fantasy some of our national leaders want to promote. “Terry Schiavo will be kept alive even if it takes an Act of Congress!” “No one need ever discuss with their doctors how their life might end.” Such attitudes treat American citizens like children, too young to come to terms with their own mortality. Why should we be surprised to see town hall displays of childlike temper tantrums? Treat people like children and they will act like children.

Playing into America’s pathological denial of death is to treat mature individuals like children, and very young children at that. Researchers and clinicians tell us it’s normal for children 3 to 5 years old to deny death is final. Telling a very young child Granny is “asleep” or “on a long journey” supports the denial. Between five and nine years old children come to accept that death is final, and can think about it’s happening to others. By about age ten a child is usually ready to start thinking about her own death.

National leaders deliberately sparked fear and anger over a consultation about death and sensational media threw fuel on the fire. They would have us remain a nation of five year olds, stuck in an infantile refusal to acknowledge, grieve over, and plan for, our own deaths or the deaths of those we love. For shame. Certainly that’s no way to come into our greatness as a nation. Certainly such stunted psychological and spiritual development is not what it means to be a human, created, as many believe, in God’s image.

No, coming into the fullness of being means living a life of thoughtful judgment and conscious decisions. And that includes decisions about the end of life. Recently the New York Times carried a story of the care and intention with which the Sisters of St. Joseph manage the individual deaths of their aged nuns as the entire order gradually dies out. They are thinking about their dying and they are talking about their decisions. “We approach our living and our dying in the same way, with discernment,” Sister Mary Lou Mitchell told the reporter. “Maybe this is one of the messages we can send to society, by modeling it.”

In Adulthood — a kingdom still distant from our shores — leaders will foster dialogue and pass laws to help their constituents on that very human quest to discern and embrace both life’s sweetness and death’s certainty with a similar quiet grace.

The Conversation

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”

–Dylan Thomas, Do Not Go Gentle Into That Good Night

Dylan Thomas’ famous admonition aside, at the appropriate time (and not a minute too soon), most ill and elderly do wish to go gently into that good night. Very gently indeed.

The “rage, rage” we’ve witnessed is not so much at the dying of the light, but at the suffering caused by brutal, invasive and futile procedures all too common in today’s high-tech mode of dying.

Most Compassion & Choices supporters would eagerly bargain away a few days of extended life in an intensive care unit in exchange for final days spent at home, in relative comfort and meaningful communion with those they love. Such folks don’t adhere to the doctrine of redemptive suffering and would rather slip away peacefully if imminent dying would be otherwise prolonged and agonized.

Well, the evidence is in. Recent studies indicate the single most powerful thing a person can do to improve the chance for gentle dying is — simply and courageously — to talk about it.
Talk to whom? First and foremost, talk to your personal physician. It’s never too early for this conversation. This March an important study appeared in the Archives of Internal Medicine. A large, multi-institutional study, it evaluated the quality of life at the end of life for people with advanced cancer.

Lo and behold! Those individuals who had discussed end-of-life values and preferences with their doctors experienced significantly less suffering in their final week of life. A significant reduction in intensive care hospitalizations and high technology interventions accounted for this desirable outcome. Not too surprising, the patients who had talked with their doctors, and who experienced a more peaceful, pain-free end of life, also received less costly care than those tethered to the tubes and machines meant to extend their lives.

But one finding is stunning enough to be a game-changer in end-of-life care. For all the suffering they inflicted and all the cost they incurred, the tubes and machines actually bought no life extension. None.

It’s hard to imagine a worse situation for a person dying of cancer — trapped in an intensive care unit, remote from family and loved ones, suffering through intrusive and painful medical procedures, and living no longer than those who chose to end their lives in hospice, at home, with loved ones at their side.

Start this conversation with your doctor. There’s no reason not to. Unfortunately, your doctor is unlikely to broach the subject, so it’s up to you. You might wonder how to begin this conversation without seeming morbid.

I humbly offer several openers for your consideration:

• “I just read about a study that found all that high technology at the end of life doesn’t work and just causes suffering. Do you know I wouldn’t want that?”
• “My relative (or friend or acquaintance) had a terrible death, hooked up to tubes and machines. I think I’d just want to be home with my family. What do you think about a decision like that?”
• “I love so much about my life — being active, loving my family. If none of that were possible anymore, I’d like to go out peacefully, without a lot of heroics. Does that fit with your medical philosophy?”

Note that for unmarried LGBTQ folks, this conversation should include identification of the person you would designate as surrogate decision-maker if you could not speak for yourself, and those who should be allowed to visit you even if more traditional “close family” might object.” Compassion & Choices has visitation forms available for this purpose as well.

If the conversation reveals a physician seriously out of sync with your values and beliefs, find another whom you feel you can trust to honor your wishes. As we often say, “When you’re dying is no time to find out your core beliefs and your doctor’s are incompatible.”

If you are uncomfortable having this conversation with your doctor in person, broach the subject with a letter. You can download Compassion & Choices’ free “Letter To My Doctor” and mail it or hand-deliver it to your doctor at your next appointment.

Call our End-of-Life Consultation Service at Compassion & Choices (1-800-247-7421) if you’d like to report on how your conversation went. We’d love to hear from you.

Best of luck.

Do You Want a Resuscitation Attempt?

            “Do Not Resuscitate.”  Doesn’t that order in a hospital chart mean you’re going to die? Doesn’t it mean doctors won’t prescribe medicines that may keep you alive? Wrong on both counts. “Do Not Resuscitate (DNR)” means only that should your heart stop, there will be no attempt to restart it with cardiopulmonary resuscitation (CPR). All other types of appropriate care and intervention are continued for patients that have DNR orders. Many patients with DNR orders recover, go home and live long lives.

            There are good reasons for having a DNR order even when a person is not terminally ill. The odds of surviving an in hospital resuscitation attempt are not great, even for healthy people. Only about 15% do. When old age, frailty, or multiple medical problems are present the odds go down significantly. Only 1 to 2% of this population survives long enough to leave the hospital. Of those leaving the hospital, even fewer leave without significant problems associated with the attempt. According to an article in Neurology, major brain damage occurs more than 50% of the time (Jaffe, AS. Neurology, 1993: 43:2173).

            CPR outside a hospital is even less successful. A less than 5% survival rate is common in many areas. Even in the best scenarios (immediate help by a trained bystander) only 19% of those who survived out of hospital CPR efforts did so without brain damage . Yet, as I noted in a previous blog, a living will and/or advanced directive asking that resuscitation not be performed is not adequate in many states. If you do not want CPR you must find out how your state regulates this!

            Just because there is an 85% CPR survival rate on our favorite television shows doesn’t make it so. It’s important that we all understand the facts about CPR. If you decide that CPR is not in your best interests, discuss your wishes with family members and your physician and make sure that the proper documents your state requires are completed. Requesting a DNR order is not giving up. It is not saying you want to or are ready to die. By itself it simply means that the odds of a successful attempt do not meet the criteria you have for quality of life. You have a right to determine what that means for yourself.