Friday, July 27, 2007

End-of-Life Rights & Choices

Major media organizations have published excellent, extensive articles about end-of-life care or hospice topics, that are available online, full-length. And new books were published on these topics.

Chicago Tribune writers Judith Graham & Vincent J. Schodolski published their article "End-of-life care takes forefront" on January 18, 2006. It remains available presently through the
Seattle Times, as reposted here.

Physician-assisted suicide was a hot issue in bioethics in the mid-1990s, when Oregon became the first state in the nation to legalize the controversial practice. Today it doesn't command the same attention. Though opinions on the topic remain deeply divided, the debate has gradually shifted to a larger concern — the way America cares for people who are dying.

"The central issue, we all realize, is end-of-life care," said Dr. Ezekial Emanuel, chairman of the department of clinical bioethics at the National Institutes of Health. "Assisted suicide is really a sideshow."

For the vast majority of people who are terminally ill, the question is not whether they'll ask a doctor to help them end their life, it's whether anyone can relieve their depression and manage their pain, Emanuel said. * * *

The article focused on the political debate and law-making that surround end-of-life care & decision-making.

As to the day-to-day decisions to be made by medical providers, the New York Times published a widely-noted article on October 10, 2006, by Jan Hoffman, entitled "The Last Word on the Last Breath". The non-profit organization Death with Dignity subsequently reposted the article on its website.

The patient, only 35, had been in a persistent vegetative state for 15 years. Recently, he had developed septic bedsores and pneumonia. His kidneys were failing, and despite the feeding tube, he was losing weight. Now he was in cardiac arrest. He was dying.

But the young staff doctor had no choice. The patient’s relatives, convinced that the man could communicate, had insisted that all revival efforts be made. So the doctor gave the patient a few mouth-to-mouth breaths, climbed on the bed and began vigorous chest compressions, trying cardiopulmonary resuscitation. * * *

* * * [T]he question of who has final say over whether CPR should be attempted on a gravely ill patient — the doctor, the patient or the patient’s representative — is live and unsettled in law and medicine. * * *

The article reviews the views of physicians, patients & their advocates, legislators, and lawyers, through interviews & historical developments, regarding end-of-life medical treatments. The article considers the current status & enforceability of "do-not-resuscitate orders", "living wills", and advance health care directives. The article acknowledges that medical approaches to end-of-life care remain unsettled & non-standard, nationwide.

Some of the confusion arises from the very definition of "death". This is the subject of an article by Claude Lewis published
in the Philadelphia Inquirer on July 25, 2007, entitled "If 'death' ain't what it used to be, when is life over?":
As far back as human history can be traced, death has been seen as a single, irrevocable event, the end, after which the body was prepared for burial or destruction, even before grieving got under way.

But in the 21st century, things are dramatically changing. What we mean by death, when it occurs, what constitutes it - all these are changing, with ramifications for medicine, law and society at large. * * *
Individuals, however, can be empowered in making such personal decisions. An article by Susan Orr, published April 25, 2007, by the Evansville (Illinois) Courier & Press, entitled "Families face tough end-of-life choices, noted a lecture by an author who advocates just such empowerment.
Pat McCormick of Evansville still remembers the day she saw her father shed tears of pain. He was dying of cancer, hurting and being whisked off for a medical test.

“Not ’til later did I realize I could have said no,” McCormick said.

McCormick’s experience ­— witnessing a terminally-ill loved one enduring unnecessary pain and invasive medical care, is a common one, but it doesn’t have to be, said health-care writer Stephen Kiernan.

Kiernan is the author of “Last Rights: Rescuing the End of Life From the Medical System,” a New York Times-bestselling book about end-of-life care. * * *

* * * [L]egal, ethical and religious considerations can make it difficult to decide when enough is enough, he said.

The good news, he said, is that there are things that individuals, and society at large, can do to improve end-of-life quality.

Individually, people can write advance health care directives that spell out the amount of care they want when facing an incurable disease or condition. They can also volunteer at a hospice and talk to their loved ones about end-of-life issues to reduce the fear surrounding the topic. And faith communities should get involved with the issue as well, Kiernan said.

“It is fundamentally a spiritual event and a family event way more than it is a medical event,” Kiernan said.

That book, "Last Rights", was published on November 4, 2006, by St. Martin Press, as described by Amazon here. The online reviews rate it highly. Many bookstores sell it.

Well-known Newsweek writer Jane Bryan Quinn published her thoughts on June 18, 2007, in an article entitled "
Patients have a right to make their own medical decisions" [Link expired].
There's more reason than ever to leave written instructions about the medical care you want if you're unable to speak for yourself.

In the wake of the Terri Schiavo case, in which her husband and parents fought over whether to remove her feeding tubes, right-to-life activists have been working on state legislatures.

Their objective: requiring doctors and families to keep life support going for patients in a permanently comatose state. If that's not what you want, you need to make it clear. * * *
She briefly answers three questions:
  • "What's happening?"
  • "Have any states made it easier for families to make life-and-death decisions?"
  • "What can you do?"
She confirms what most lawyers, doctors, health care providers, & hospice workers say: Execute an advance health care directive or a "living will".

Both such documents can be executed with assurance in Pennsylvania under the new
Chapter 54 of Title 20, PA Consolidated Statutes, enacted by Act 169 of 2006, which took effect on January 29, 2007 (as discussed in many other postings on this Blog).

Another well-known journalist, Jane E. Brody, published an article in the New York Times on November 28, 2006, entitled "Medical Due Diligence: A Living Will Should Spell Out the Specifics" This article also was reposted in full, by Addicus Books on its website here, as a review of its book, published in October, 2006, entitled
"Understanding Your Living Will: What You Need to Know Before a Medical Emergency", by Ferdinando L. Mirarchi, D.O.
When I ask people whether and how they have made preparations for the ends of their lives, the most frequent response is, “Well, I have a living will.” But chances are they are unaware of the serious limitations inherent in such a document and how it is likely to be interpreted by medical personnel should a life-threatening crisis arise.

A living will is an advance directive, a document that states your wishes about how you should be cared for at the end of your life. It is meant to be activated when you are unable to say what you do or do not want to be done medically — if, for example, you are in a terminal condition, your heart and breathing cease, you are in a persistent vegetative state because of severe brain damage or you are too demented to understand the situation.

A living will lists your general preferences for or against life-prolonging treatment like cardiopulmonary resuscitation if your heart suddenly stops, or mechanical respiration if you cannot breathe well enough on your own. But the simple statements contained in most living wills, more often than not, are hard to apply to the great variety of medical situations that can arise. * * *
One step, often overlooked, that can be taken in an acknowledged "end-of-life" situation, is hospice care.

Most recently, Forbes Magazine posted an article, dated July 25, 2007, entitled "
End-of-Life Hospice Care Underused", about hospice care as a viable medical treatment alternative in an end-of-life situation:

Too few Americans entering life's final phase are availing themselves of high-quality hospice care, despite the fact that Medicare covers the expense, experts say.

The situation is only going to become more problematic as the nation's "baby boomers" reach the end of their expected life spans in coming decades, according to two articles in the July 26 New England Journal of Medicine.

"Hospice care is underutilized -- only a third of Americans die under the care of hospice, and hospice care is free," noted the author of one article, Dr. Gail Gazelle, assistant clinical professor at Harvard Medical School. "Far too often, patients end up in an ICU, rushed to the emergency room, and they end up dying there, when really they would much rather have died in their own home," she added. * * *

"Baby boomers are going to turn all of this around," Gazelle said. "They are so empowered around their health care and the health care of their loved ones -- they're going to push hard to make sure that their needs are met."

Wright agreed. "I think that we will see the reimbursement structure change dramatically over the next decade," she said. "Baby boomers have received the best medical care imaginable for their entire lives -- why should their death be any different?"
I collect & repost any such references that I find onto a dedicated website, entitled PA HealthCare DecisionMaking. If you encounter any, please send me an email with the information for posting.