What you read in end-of-life care literature can be misleading.
Much of the literature written to guide the public in end of life matters comes
from sources such as Last Acts and Partnership for Caring.
Keep in mind that these sources write from a right-to-die
perspective. A right-to-die perspective assumes that this
is 1970 and hospitals will try to keep you alive to use their
services as long as they possibly can. But this is a new century.
The healthcare landscape is very different from the old right-to-die
scenario. Now, more often than not, hospitals have an incentive
to move patients out quickly. This is especially true of patients
on Medicare, irresponsible patients (e.g., obese patients
and those who use tobacco), and high-maintenance patients
on low-paying insurance policies.
No one disputes that forcing fluids on the patient whose kidneys have shut down would be torture. No one would advocate that.
The Soros/Last Acts project
worked hard to train doctors, nurses, and the public to look
upon medical technology as a sinister trap. It is a world
where life-saving becomes "life-prolonging;" where
death is the objective.
This is an inverted reality. Parse the literature accordingly.
|Protect "our most vulnerable
As in: "It would be nice to have a real public policy of what to do with our most vulnerable patients when they have no one to speak for themselves, or where there is this mess of controversy."
This was Alice Herb, JD, quoted in Thomson's Medical Ethics Advisor, explaining that killing Terri Schiavo was fine because Terri Schiavo was severely brain damaged; but it would be nice if we had a way to avoid this unsightly squabbling.
Thus, protecting the most vulnerable translates to: Protect the right to die for disabled, elderly, and chronically ill patients who have been assessed as not worth rehabilitative treatment and who are assumed to be better off dead.
|"Just get it in writing. You are protected
if you have an advance
As in: 1997 Washington Post article quoting Karen Orloff Kaplan of Last Acts:
Kaplan emphasized that advance directives are not always about "turning off care." Some people want a "full-court press" by the hospital, she said. "Somebody might say, 'If I get hit by a truck and there's a chance to fix me up and get me on my feet again, I want to do it.' "
Reality: Ethics committees and futile care policies can have the last say:
1) Futile care theory explained in a classic article by Wesley J. Smith, National Review, January 6, 2003:
Who should have the right to decide whether you receive life-sustaining medical treatment during a critical or terminal illness? Most would say with great confidence, "Me. Or, if I am unable to decide, then my family." That should be true. Indeed, it used to be true. But in a growing number of hospitals, your right-to-decide is being taken away from you (or your family) by bioethicists and members of the medical intelligentsia who believe that their values and priorities should count more than yours when determining whether you shall receive wanted medical treatment. To put it bluntly, even if you want to live, even if you want medical treatment to enable you to fight for your life, you may be told that the hospital reserves the right to refuse service.
2) From March, 2005; Jim Lehrer interviews Charles Sabatino of the American Bar Association (Sabatino was a chief legal consultant to Last Acts):
JIM LEHRER: What is the legal history on when there has been disagreement of some kind between - among members of the family or doctors or whatever, and a living will had to go before a court? What is the history? Is there one?
CHARLES SABATINO: Well, I can probably count the cases on one hand that have had that scenario.
JIM LEHRER: Is that right?
CHARLES SABATINO: Yes. Generally, where everyone is acting in good faith, the courts will bend over backwards to give providers the benefit of the doubt. But what the issue will --
JIM LEHRER: Medical providers?
CHARLES SABATINO: Medical providers.
JIM LEHRER: I see.
3) From another interview with Mr. Sabatino, Christian Science Monitor, June 22, 2005:
"There is no such thing as a bulletproof advance directive," says Mr. Sabatino. "Any physician can refuse to comply with it based upon a 'conscience objection.' So your greatest protection against it being ignored is to discuss what you want with both your proxy and your physician - and ideally with your other family members, too." Sabatino says individuals who are concerned that certain family members might try to impose their own wishes should consider expressly excluding them - in writing - from having any role in the decision.
4) From the Winter, 2001, Bulletin of the American Academy of Hospice and Palliative Medicine, page 3:
A letter from the Health Care Financing Administration (HCFA) dated April 20, 2000, addressed to all regional administrators, Regions I-X, referenced the Patient Self-Determination Act, stating 'Medicare-certified hospice providers are bound by the Act's requirements and may not refuse to have staff skilled in resuscitation or refuse to revive a patient who desires to be resuscitated.' After discussing the relative futility of applying this medical procedure to patients with end-stage disease processes--an issue raised by Dr. Barry Kinzbrunner, national medical director for VITAS--AAHPM developed a position paper addressing these issues. The draft version states that the academy strongly opposes HCFA's position that hospice staff provide cardiopulmonary resuscitation, because 'resuscitation in the terminally ill is medically ineffective.' NHPCO will continue to work with HCFA on how they will proceed on this issue. The AAHPM position paper should heighten recognition that HCFA must not mandate policy that results in the provision of ineffective medical procedures to Medicare beneficiaries.
"Too many patients are simply abandoned; family leave them."
"Be prepared to fight for your loved one."
Example:“The Florida State Guardianship Association bestowed its Guardian of the Year Award on Schiavo for carrying out his wife's wishes . . .
' We see a lot of situations where family steps away,' said association president-elect Michelle Kenney, a care manager and professional guardian in Broward County. 'He stuck by. He didn't walk away.'”
["Guardianship group welcomes Michael Schiavo as hero." Maya Bell, Orlando Sentinel, 8/6/05]
Reality: The family that does not step away, who wants to assume care of the patient and provide a chance at rehabilitation, is sometimes abandoned by the healthcare provider and/or the courts. From a right-to-die perspective, the presumption is that the patient who cannot speak for herself but whose quality of life will be diminished, will want to die, not live.
|"We remain neutral on the issue of assisted suicide" [or on the issue of euthanasia]
As in this recommendation from assisted suicide advocates Christine Cassel and Timothy Quill:
"We argue in favor of medical organizations' taking a position of studied neutrality on this contentious issue." —Annals of Internal Medicine. February 4, 2003. Vol. 138, Issue 3, pp. 208-211.
Translation: Our life's work is medicine, law, or ethics, but we should say we are unable to decide whether hastening the death of disabled, frail, elderly, or chronically ill humans is right or wrong.
|"We are opposed to assisted suicide"
||But we are in favor of suggesting the option of removing feeding tubes, or sedating the patient into a coma. These two options — withholding/withdrawing hydration, and terminal sedation — are our legal right, according to the Supreme Court. You may not deny us a right that is the law of the land. [1997, Vacco v. Quill; Washington v. Glucksberg]
|"reforming hospital accreditation" with regard to pain management
||normalizing liberal use of opioids; relying heavily on legality of "double effect"
||. . . does not necessarily
mean decrease accidental deaths in hospitals. Frequently,
hospitals set goals to increase the number of people discharged
quickly, to die at home.
|"withholding medical treatment"
||withholding hydration from patients who can still assimilate nutrition and hydration
Someone who will fight for the patient's right to death.
Used in a sentence at the ACP-ASIM
bioethics site: "A working group of physicians
and patient advocates has developed a set of tools that
can help patients live well with serious illness near
the end of life." No recognizable advocates of
sanctity of human life in the list of working group
members. The list, mostly bioethicists, features advocates
of WNH and assisted suicide (including Timothy Quill).
|"quality of life"
||when an index is used to rate quality of life, generally the next step is to use that rating to assess the pros and cons of supporting that life.
|"access to hospice"
||analogous to legalizing "right-on-red." At first, everyone is happy to be offered free access to turning right at a red light. Next thing you know, all drivers have an obligation to turn right at every red light.
[I would like to credit the source of this clever analogy. If you know where it was first said or published, please send me an email with the information.]
A patient who has been diagnosed as having a terminal illness is terminally ill. The PBS special Before I Die (the first Last Acts publicity campaign) defined terminal illness:
"Refers to an illness or condition that is incurable and irreversible. When a person is diagnosed as terminally ill, death is expected in a relatively short period of time."
However, this begs the question: What is a 'relatively short period of time?" Some states have defined "imminent death" as death expected within one year. That's a lot of leeway.
Thus, a patient who is "terminally ill" could be a patient who has a prognosis of one to four weeks to live, or it could be a patient who can expect to live many years -- including many happy, fruitful days.
To "palliate" means to hide, or relieve, symptoms. This is not a new idea. For centuries, good physicians have been concerned about the comfort of their patients. Controversy enters the picture when we ask, at what point in "the continuum of care" or along "the trajectory of the illness" should we substitute palliative care for "life-prolonging interventions" or "heroic measures" or life-sustaining treatments?
Approaching Death — the landmark report from Institute of Medicine — recognized the fact that there was no firm definition of palliative care in 1997. This remains a problem to this day. There have been efforts to reach consensus on a definition, funded largely by Soros and the Robert Wood Johnson Foundation. [see Precepts of Palliative Care; and the National Consensus Project].
From Approaching Death, (1997) page 31:
"The committee consulted several definitions of palliative care. Many follow that offered by the World Health Organization: "the active total care of patients whose disease is not responsive to curative treatment…[when] control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount" (WHO, 1990, p. 11). Thus, [Kathleen] Foley* speaks of the active total care of patients whose disease is not responsive to curative treatment (Foley, 1994). Another source refers to the "appropriate medical care of patients with advanced and progressive disease for whom the focus of care is quality of life and in whom prognosis is limited (although sometimes it may be several years)" (Association of Palliative Medicine of Great Britain and Ireland, cited in ABIM, 1996a). Similarly, the definition prepared in Great Britain in 1987 when palliative care was first recognized as a specialty describes palliative medicine as the "study and management of patients with active, aggressive, far-advanced disease for which prognosis is limited and the focus of care is quality of life" (Doyle et al., 1993, p. 3). "
* Kathleen Foley was the founding director for Soros' Project on Death in America.
|We die "in God's time" (rather than on our own terms).
Though this seems a powerful pro-life statement, even this notion has been stood on its head.
For the past few years, right-to-die advocates have promoted death "on our own terms" (coincidentally, the title of Bill Moyers' television series about death with dignity). This is a popular phrase with those who put autonomy first. The idea is that competent individuals should have the right to choose; have control of their own death.
Juxtaposed to that concept is a belief that we must allow God to determine the time and place of our death; that we must not hasten death. Rather, we die "in God's time."
Unfortunately, "in God's time" has been adopted by the "withdraw the hydration" zealots. By "zealots," we don't mean those who recommend removing hydration/nutrition when the patient's kidneys have stopped working, or when supplying fluids would actually cause discomfort. We are talking about advocates of so-called natural death, whose arguments are roughly "it is futile to continue supplying hydration/nutrition to this patient; hydration/nutrition will only prolong the dying process; without hydration, the patient will die of his/her underlying chronic illness or disability within [a week; a month; a year] if we just stop treatment."
One of the most helpful articles we have seen on the subject of withdrawal of nutrition/hydration is an article by clinical psychologist Barbara Olevitch, Ph.D.. Dr. Olevitch provides a guide to discerning the language of hospice, titled Feeding Tube Decisions: The Hospice Language Barrier.
|"a good death"
Translated in a duty-to-die world:
Nicholas Christakis, MD, PhD, MPH — internist, sociologist, Soros faculty scholar, RWJF scholar — quoted in 2005 UPI article: "We found a good death was considered by 96 percent of Americans as free of pain, 89 percent said it includes not burdening the family and 81 percent did not want to burden society." [emphasis added]
We have somehow moved from having dignity as
a creation of God; to the imperative for a dignified
death (dying in a dignified manner).
- From the Hemlock Society website: "Hemlock
That physicians should be allowed to
help a hopelessly ill patient achieve a peaceful,
dignified death if that's what their patient
- Dr. Muriel Gillick, who has long waged a war against
intubation: "The woman was intubated--she had
a breathing tube inserted through her mouth and into
her lung, which was attached to oxygen
line was started and the woman was hooked up to an
electrocardiogram machine. The resident in charge
stood at the electrocardiogram, interpreted the "rhythm,"
(the information provided on the EKG about the electrical
activity of the heart)
and issued orders.
I was distraught. A woman in her nineties had died.
While I doubted she suffered during those last minutes
of her life--she had been deeply unconscious--was
this a dignified way to die?"
- Barbara Coombs Lee of Compassion in Dying: in 1996,
testifying to Congress in defense of Oregon's legalization
of PAS: "The Act creates a safe harbor in Oregon's
assisted suicide laws for an attending physician to
provide a prescription for lethal medication, upon
repeated voluntary and informed requests from a competent,
adult, terminally ill patient. The patient may then
obtain the means for a humane and dignified death
at the time of his or her own choosing."