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

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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.



Brief Filed in Montana Case

Court to Hear Oral Arguments September 2nd.

Compassion & Choices and four Montana doctors filed their brief with the Montana Supreme Court August 14 in the case of Baxter et al v. Montana. Plaintiff Robert Baxter was suffering from lymphocytic leukemia when the case was filed and died late last year.

The appellees urge the State’s highest court to affirm the lower court’s decision, which found that aid in dying was a fundamental right under the Montana Constitution’s guarantees of privacy and dignity. Compassion & Choices’ Legal Director Kathryn Tucker and well-known Missoula litigator Mark Connell represent the plaintiffs/appellees.

Here are excerpts from the brief:

“Patients will inevitably confront the question of whether to choose aid in dying in different ways. This is as it should be. Because individual lives, deaths and consciences are at stake, each individual bears the consequences of his/her decision. The question before this Court is whether individuals who want aid in dying will be allowed to choose it, or whether the government will be permitted to make the choice for them and flatly ban the option. “

“Deciding how much suffering to endure in the final ravages of terminal illness is without doubt among the most private, personal, and important decisions of a lifetime. The right to choose aid in dying warrants constitutional protection and should not be usurped by the State.”

The Montana Supreme Court will hear oral arguments Wednesday, September 2nd, in Helena. If the Court affirms, it will be the first high court in the nation to find constitutional protection for aid in dying.


Here is the Truth, Granny

Judith Bachrach writes about the controversy over end-of-life consultation in health insurance reform. She sets the record straight, and offers a personal story of the importance of making your wishes known.

“So what Section 1233 would do, if passed, would be to institutionalize the idea that it is the patient – not the doctor and not the government – who has the last word on how to die, when to die, in what circumstances to try to ward off death, and in what circumstances to accept it.

“How would such legislation accomplish all this? Once every five years, according to the proposed bill, a doctor can initiate a fairly specific discussion with a patient on end-of-life issues. Does the patient, in the event of a terminal diagnosis, want hospital care or hospice care? To be resuscitated if the heart stops? When things go completely downhill and death is likely at hand, does the individual want only palliative pain-killing medication or would she prefer to have physicians throw every medical marvel at a killer disease?”

Read the article in our Press Release >>

Studies on End-of-Life Treatment Conversations

Patients want information and consultations improve care.

Studies confirm that open communication decreases suffering and lessens anxiety and depression. Research shows that terminal patients who have an end-of-life discussion with their physician are more likely to receive effective comfort care and are less likely to die in an intensive care unit.

“As an organization working with the dying for 28 years, we know that information and counseling regarding end-of-life care are essential to the comfort and peace of many terminally ill patients and their families,” Barbara Coombs Lee, president of Compassion & Choices. “These poignant conversations help patients weigh all options and make an informed decision that reflects their values and beliefs. It gives the physician an opportunity for a heartfelt discussion of the benefits and risks of all available treatments, and it can facilitate earlier access to hospice care.”


End-of-life discussions decrease suffering and distress for patients and loved ones
“End-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment.
The worst outcomes were seen in patients who did not report having these conversations.
Given the adverse outcomes associated with not having end-of-life discussions, there appears to be a need to increase the frequency of these conversations. By acknowledging that death is near, patients, caregivers, and physicians can focus on clarifying patients’ priorities and improving pain and symptom management.”

Hospice patients live longer
“This study provides important information to dispel the myth that hospice hastens death and suggests that hospice is related with the longer length of survival by days or months in certain terminally ill patients. This extra time might be particularly important to patients and their families, as it may allow some people to use the end of life as a time of resolution and closure.”

Inability to participate in treatment decisions can cause patients uncertainty and distress
“Complying (to the physician’s treatment recommendations) without participation was characterized by participants’ feelings of uncertainty and distress, and of being rushed into submitting to decisions without having time to reflect on the information provided or the opportunity to influence the treatment and care process. To participate (or choosing not to participate) builds on open and affirming dialogue, information and knowledge about the illness. Patient participation in treatment and care decision making is interpreted as a health promoting way of coping with illness.”


87% of patients say they “want as much information as possible”
In a study of 2,331 patients with cancer, 87% report they want as much information as possible regarding their diagnosis and prognosis, even if it isn’t good. The study authors note that: “patients need to plan and make decisions about the place of their death, put their affairs in order, say good-byes or forgive old adversaries and be protected from embarking on futile therapies.”

Patients want doctors to communicate with them about their treatment options
“Participants stated that fear of pain and inadequate symptom management could be reduced through communication and clear decision making with physicians. Patients felt empowered by participating in treatment decisions.”


End-of-life discussion only taking place about half the time
“Many patients diagnosed as having metastatic lung cancer had not discussed hospice with a provider within 4 to 7 months after diagnosis. Increased communication with physicians could address patients’ lack of awareness about hospice and misunderstandings about prognosis.”

Facts dispel rumors about legislation

Recent commentary on health care reform in various media outlets is rife with gross — and even cruel — distortions.

Opponents of health care reform are spreading the ridiculous falsehood that through end-of-life counseling sessions the government is somehow trying to interfere with a very personal decision. Rather, the sessions are an option for elderly patients who want to learn more about living wills, health care proxies and other forms of end-of-life planning.

Knowledgeable sources provide the facts to dispel the rumors:

Rep. Earl Blumenauer, (D, OR), Huffington Post, July 24th, 2009:
“Those with no solutions and no answers for how to reform our health care system are hijacking positive, bipartisan efforts that have contributed to a strong bill passed out of two House committees. Republican leadership has abandoned all efforts at passing needed health care reform — even turning their attacks to legislation that has been actively crafted and supported by both parties.”

“This bill has bipartisan support (the main cosponsor is a Republican doctor) as well as support from a diverse coalition like AARP, the American College of Physicians, and Catholic health systems. It is an area where — no matter from a red or blue state — many have been able to bridge the divide.”

President Obama, speaking at an AARP Town Hall, July 28, 2009:
“The idea there is to simply make sure that a living will process is easier for people — it doesn’t require you to hire a lawyer or to take up a lot of time. But everything is going to be up to you.

And if you don’t want to fill out a living will, you don’t have to. But it’s actually a useful tool I think for a lot of families to make sure that if, heaven forbid, you contract a terminal illness, that you are somebody who is able to control this process in a dignified way that is true to your faith and true to how you think that end-of-life process should proceed. You don’t want somebody else making those decisions for you. So I actually think it’s a good idea to have a living will. I’d encourage everybody to get one. I have one. Michelle has one. And we hope we don’t have to use it for a long time, but I think it’s something that is sensible.”

“The intent here is to simply make sure that you’ve got more information, and that Medicare will pay for it.”

“So if Medicare is saying you have the option of consulting with somebody about hospice care, and we will reimburse it, that’s putting more power, more choice in the hands of the American people, and it strikes me that that’s a sensible thing to do.”

AARP Executive Vice President John Rother, in response to recent commentary by Betsy McCaughey in various media outlets:

“Betsy McCaughey’s recent commentary on health care reform in various media outlets is rife with gross—and even cruel—distortions.”

“The main opponents of this research are those groups with a vested interest in a health care system that wastes billions of dollars each year on ineffective or unnecessary drugs, treatments or tests. Given Ms. McCaughey’s position as a Director of a medical device producer, I would hope that any potential conflict of interest has not influenced her commentary.”

“Facing a terminal disease or debilitating accident, some people will choose to take every possible life-saving measure in the hopes that treatment or even a cure will allow them more time with their families. Others will decide that additional treatment would impose too great a burden—emotional, physical and otherwise—on themselves and their families, declining extraordinary measures and instead choosing care to manage their discomfort. Either way, it should be their choice.”

Catharine Richert, Politifact, Thursday, July 23rd, 2009 at 7:02 p.m.
“McCaughey incorrectly states that the bill would require Medicare patients to have these counseling sessions and she is suggesting that the government is somehow trying to interfere with a very personal decision. And her claim that the sessions would “tell [seniors] how to end their life sooner” is an outright distortion. Rather, the sessions are an option for elderly patients who want to learn more about living wills, health care proxies and other forms of end-of-life planning. McCaughey isn’t just wrong, she’s spreading a ridiculous falsehood. That’s a Pants on Fire.”
Read the Press Release from Compassion & Choices >>