Should You Have a Living Will?

There's a fantastic post at GeriPal about the efficacy of the Living Will and Advance Directive documents that many end of life rights advocates -- including myself -- have promoted. What the articles does well is look at a number of current studies and articles and address points made by prominent activists. It asks us what the best way is for a patient to protect their rights at the end of life. Sadly, there is no foolproof way to ensure that the medical decisions made for you will be consistent with what you want. I recommend you read the entire post, but here's a clip:

“Enough. The living will has failed, and it is time to say so.” So said Angela Fagerlin and Carl Schneider in 2004. “Living wills are still widely and confidently urged on patients, and they retain the allegiance of many. For these loyal advocates, we offer systematic proof that such persistence in error is but the triumph of dogma over inquiry and hope over experience.” Joann Lynn wrote an essay titled Why I Don’t Have a Living Will, saying, “I do not have a living will because I fear that the effects of having one would be worse, in my situation, than not having one. How could this be? A living will of the standard format attends to priorities that are not my own, addresses procedures rather than outcomes, and requires substantial interpretation without guaranteeing a reliable interpreter.” Thomas Pendergast said, “[Since the passage of the Patient Self Determination Act in 1990] advance directives are recorded by medical personnel more often but are not completed by patients more frequently. The process of recording them does not enhance patient-physician communication. When available, advance directives do not change care or reduce hospital resources. The most ambitious study of advance care planning, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments [SUPPORT], failed to show any change in outcomes after an extensive intervention.” Prominent figures in palliative care decried persistent research and health policy efforts to promote living wills, saying, “when have living wills ever been shown to do anything???!!!”

And yet, after being thrashed to within an inch of death, two recent studies breathed life into advance directives. Before getting into the particulars of these studies, it’s important to understand how and why we came to have advance directives in the first place.

April 13 Teleconference on Advance Directives.

Thaddeus Pope at Medical Futility Blog reports on a conference that will be held on April 13:

FIVE BIG MYTHS OF ADVANCE CARE PLANNING AND HOW TO STAY ANCHORED IN REALITY

Sponsored by the ABA Health Law Section, the Senior Lawyers Division and the ABA Commission on Law and Aging

Tuesday, April 13 at 2:00-3:30pm Central

This complementary teleconference (and podcast will be posted here afterwards) will address the five biggest myths that plague advance care planning and how to steer clear of them and make advance care planning more effective.

Myths:

1. People should use their state’s official advance directive form(s).
2. Your advance directive should include as specific instructions as possible.
3. Advance Directives are legally binding so doctors have to follow them.
4. Doing everything possible for dad means keeping dad alive at all costs.
5. A written advance directive is better than talk.

Since the mid-1970s, health care advance directives have become the central legal tool to make sure one’s health care wishes are known in a formal way and, it is hoped, followed. However, clinical realities and the medical-social sciences literature over the last 30 years cast doubt on the effectiveness of advance directives. The reality is that directives are just a part of a process of advance care planning that requires more than just a form and a signature. Sometimes forms get in the way.

Panelists:

• Richard Payne, MD, Professor of Medicine and Divinity, Esther Colliflower Director, Duke Institute on Care at the End of Life, Duke University Divinity School
• Charles P. Sabatino, J.D., Director of the American Bar Association’s Commission on Law and Aging

NEJM, Health Care Choice, and Losing Our Ability to Decide.

A new study shows that about 30% of us lose our ability to make our own health care decisions by the end of life:

Nearly 30% of seniors will eventually need someone else to make healthcare decisions for them, according to a recent report.

Researchers at the University of Michigan reviewed the records of 3,746 people aged 60 and older (the average age was 80) who died between 2000 and 2006. Nearly 30% of those individuals at some point prior to death became unable to make healthcare decisions for themselves, researchers found. Of that 30%, roughly two-thirds had a living will of advance directive.

Most individuals with an advance directive wanted non-aggressive palliative care; only 2% wanted aggressive life-prolonging care, according to the report. The research appears in a recent edition of the New England Journal of Medicine.

More here. And here.

Most Doctors Would Refuse a Feeding Tube For Themselves; Why Do They Place Them So Often?

Dr. Kirsch from MDWhistleblower has a new post on feeding tubes:

Last week, I was asked by a primary care physician to place a feeding tube in an NNHP, a nonagenarian nursing home patient. The patient had a panoply of active medical issues, and was at the end of life. The feeding tube was advised because the patient’s swallowing function was impaired and he was, therefore, at risk for pneumonia if he ate. These swallowing evaluations are generally performed by speech pathologists, whom I have found to be dedicated and competent professionals. As an aside, they often uncover swallowing defects that suggest that eating regular food may be unsafe, even though I suspect that these ‘defects’ were present for several years. Somehow, these patients ate regular food and survived.

As the patient was not capable of providing informed consent, I contacted the patient’s legal guardian, who is his grandson and a physician. While I was hoping that he would decline the tube and opt for comfort care, he was adamant that the tube be placed. I did so on the following day. Yesterday, a day after the tube was placed, he died, not from a complication of the procedure, but because he had reached the end of his life.

In 20 years, I’ve place over a hundred feeding tubes, primarily in elderly and demented individudals. In most of these cases, I serve as a technician. I am not consulted for my advice on whether a feeding tube is in a patient’s interest, but am asked to insert one after the decision has already been made. More than any other gastro procedure I perform, placing these tubes, called PEGs by physicians, is the most troubling. There is no question that gastroenterologists like me are placing more of these tubes than are medically necessary. Over the past few years, several medical papers have documented that providing tube nutrition for patients at the end of life, or with advanced dementia, provides no benefit. It does not prolong or improve life for many of these patients. Why, then, do we do it so often?

Read the entire post here.

Philly Inquirer Article on End of Life Care.

Lyle Fettig at PalliMed writes about the recent Philadelphia Inquirer article that examines "death panels" and debunks the fear that opponents of health care reform have tried to cause about them. The article, he says:

accurately portrays the reality of life and death in the American healthcare system as well as the potential of palliative care. The article describes the experiences of Mary Tole, a 74 year-old woman who spent 67 days in the hospital at Abington Memorial Hospital last fall (10 in the ICU and 57 on a ward). The palliative care team's crucial interactions with the patient and her family are detailed.

You can read the Philadelphia Inquirer article here.

Fettig reserves the second part of his post for a critique of the Keith Olbermann "special comment" from last week that debunks "death panels" and calls for greater use of advance directives. Fettig writes that while advance directives are important, they alone won't solve the end of life care challenges that our medical system and patients are experiencing. He writes:

But is advance care planning really the issue here? ACP often has a limited impact on what actually happens once someone becomes ill. Olbermann seems to suggest that he had those tough talks with his father before his current illness, and it sounds like his father still retained at least some capacity to make decisions up until very recently anyway. Yet his father still wound up having interminable suffering.

I look at advance care planning as sorta like an immunization. If you give 100,000 people the flu shot, some will be protected from having any symptoms of the flu, many will still get mild symptoms, and some will still have a severe case of the flu inspite of the shot. What does advance care planning immunize people against? Hopefully, unwanted intervention in the face of a poor prognosis, for one. But more importantly, it probably immunizes loved ones against "second guessing" or "thirtieth guessing" (as Olbermann puts it). It's not going to stop the second guessing altogether, though. Second guessing is part of any difficult decision, especially important decisions that you rarely make. ACP seems most helpful to me in those circumstances when the patient's poor prognosis is REALLY clear (either they are very likely to die soon regardless of what is done or they aren't likely to recover some important function, like severe anoxic brain injury). Patients who have completed living wills usually have those types of circumstances in mind when they completed the documents. But oh, the paths that you can take to reach your death and how often the prognosis (and even diagnosis) remains unclear up until death or resolution of the illness! (As in Mrs. Tole's case.) ACP seems much less helpful in those circumstances, and leaves more room for "thirtieth guessing."

And Fettig lays out the changes that should be made to our current "care pathway":

So here's the "care pathway" that needs to change:
1) Man gets really sick, goes through torturing procedure after procedure.
2) Man gets to the point where he can't take it anymore.
3) Man pleads with his son (presumably before his doctors?) to RELIEVE and RELEASE!
4) His son thinks the man's docs will look askance on this request (indicating that the doctors have never had a goals of care conversation with the son previously).
5) Only at that point does any communication seem to occur about relief of suffering and the possibility that life-prolongation should no longer be the goal.

In other words, just as when someone requires intensive care for the flu in spite of an immunization, when the living will or previous discussions don't necessarily apply to the present serious illness (or ACP hasn't taken place), you need someone who can provide intensive communication care: someone who can get to the bottom of how the illness fits into the patient's life-narrative and someone that can blend this narrative with the medical narrative in a way that makes sense to the patient's family.

As discussed previously on Pallimed, the current Medicare reimbursement scheme DOES reimburse physicians to have these difficult conversations. You can bill for time spent counseling, and there's no limit to the number of these sessions. Why don't they happen?

1) Inadequate training of most physicians to conduct these types of conversations.
2) Disproportionate reimbursement for procedures compared to "cognitive-based" tasks.
3) Inadequate availability and utilization of palliative care teams.

You can read more analysis of the Philly article by Tim Cousounis at Palliative Care Success here.

Georgia Bill Seeks to Make Artificial Nutrition and Hydration Obligatory.

Georgia Right to Life and the lawyer who represented Terri Schiavo's family are the primary proponents of a new bill in that state that claims it will "protect citizens" in end of life care, but that would actually limit patient choice at the end of life. The bill seeks to, as the Catholic church did in November, determine artificial nutrition and hydration as "obligatory care."

I haven't seen the language of the bill but judging by the sources, the effort is to prevent medical proxies from removing their loved ones from artificial nutrition and hydration, despite counsel from doctors and living will designation.

Another interesting aspect of this report is the increased encroachment of Right to Life, Catholic, and "pro-life" groups into areas of patients' rights other than reproductive rights. Strategically, it makes sense. These organizations are mobilized, have many resources, and have been allied by their common wish to dictate discriminatory policy to patients.

The same spin that has been used to reduce access to women's health care services is now being applied to seniors' medical rights. I only hope that true patients' rights activists can unite to deter this imposition of doctrinal care on all of society.

ATLANTA, Feb. 18/Christian Newswire/ -- This past week H.B. 1178 "The Patient's Right to Nutrition and Hydration Act" was introduced in the Georgia House by Representative Martin Scott and co-sponsored by Rep. Tim Bearden and Rep. Mark Butler to help provide more protections for Georgian citizens in end of life care.

This legislation seeks to insure that no patient shall be denied food and hydration. It has been brought to the attention of Georgia Right to Life and our legislature that there have been cases where patients have been denied basic food and hydration in order to speed up the dying process.

Mike Griffin, Legislative Director of GRTL noted, "We live in a time where it is illegal to deny a dog or cat food or water, but it is legal to deny a person food and water. We must value every person's life, especially in the final moments of life."

Attorney David Gibbs, counsel for the Schindler family in the Terri Schiavo case, has provided legal counsel on this bill. Mr. Gibbs noted, "Food and water should not be considered 'life support,' in my opinion. If this bill is passed into law, Georgia would recognize that important distinction to protect its citizens."

This bill seeks, among other things, to establish the fact that the feeding tube should be considered ordinary care, not medical care. The bill does allow for exceptions under an advanced directive. Currently in Georgia physicians and administrators can override a patient's wishes in an advanced directive.

"Ultimately, this bill seeks to strengthen patient's rights in Georgia. Under existing law, a doctor can override a patient's desires to have the basic essentials of food and water. No medical establishment should take away the right from a patient or their family the right to make the very private and tough decisions about end of life care," stated Dan Becker, President of Georgia Right to Life.

Georgia Right to Life promotes respect and effective legal protection for all human life from its earliest biological beginning through natural death. GRTL is one of the number of organizations that have adopted Personhood as the most effective pro-life strategy for the 21st century.

What Then Is A Natural Death?

Alex Schadenberg warns those vulnerable and child-like seniors, incapable of making their own health care decisions, to stay far, far away from those evil living will forms because their lawyers, their family, and doctors are trying to kill them!

Can you think of a greater disservice anyone with the public's ear could do for seniors? Convince them that living wills are deadly? When we living in an age where every citizen should write up a living will as soon as they reach voting age?! And update it annually.

It is just this sort of irresponsible fear-mongering and redefining of natural death, or rather illogical defining of "the culture of death," that alarms me about those who ascribe to a "pro-life" perspective on end of life care. Shaming or scaring seniors into making the decisions you feel they should is coercion, plain and simple. And perpetuates the fear of death and dying that our society battles.

From his site, Euthanasia Prevention Coalition:

Living Will - Killing Will

During the last few days I have received three Power of Attorney/ Living Will legal documents that in fact are designed as Killing Will documents.

A Power of Attorney for Personal Care is a legal document that assigns a person to make medical and care decisions on your behalf when you are unable to do so for yourself. These are important documents because the wording of the document will either protect your life and or may give medical professionals the right to abandon you or even dehydrate you to death.

My concern is that many people will visit their lawyer and have a Will and Power of Attorney documents drawn up for them without understanding that the language in the Power of Attorney document may be neutral, may protect their life, or may actually hasten their death.

Last week a supporter contacted me after reading his Power of Attorney for Personal Care document. He was shocked that he had signed a document that instructed the physician to dehydrate him to death if he were terminally ill or living with a chronic condition.

The Euthanasia Prevention Coalition distributes the Life-Protecting Power of Attorney for Personal Care to protect you from being killed. We charge $25 for this document. The information for ordering the document is at:http://www.euthanasiaprevention.on.ca/lifeprotectingpowerattorney/LifeProtectingPowerAttorney.pdf

Today, I received a Power of Attorney document from a supporter that was by far the worst one I have seen in a while. It stated:

If and when it becomes clear beyond any reasonable doubt that I am afflicted with or suffering from an irreversible injury, disease, illness or condition that is terminal, then:
(a) I direct that I be allowed to die, and that I not be kept alive by artificial means or invasive measures of any kind. Measures of prolonging life that are to be avoided, withheld, withdrawn or discontinued include:
(i) electrical or mechanical resuscitation of my heart;
(ii) nasogastric tube feedings, gastric tube feedings or parentral nutrition;
(iii) artificial mechanical respiration when my brain can no longer sustain my own breathing;
(iv) radiation treatment and chemotherapy, unless used strictly as palliative measures;
(v) any treatment for any other illness or disease (such as pneumonia) which I contract when already afflicted with a terminal disease, illness or condition (such as Alzheimer's Dementia); and
(vi) dialysis when my kidneys fail.
(b) I request that a "Do Not Resuscitate" ("DNR") notification be kept with me at all times - whether I am at home, living with family or friends, or in a hospital or other health care facility.
(c) I desire that medication be mercifully administered to alleviate pain and suffering, even though the result may be to hasten the moment of my death.
(d) If I am under the care of a physician whose moral, religious or personal professional beliefs are not in sympathy with the directives set out herein, I direct my attorney for personal care to ask that physician to withdraw from my care and to arrange for me to be cared for by another physician whose beliefs and views accord more closely with my directives, and, if necessary, to transfer me to a different hospital or health care facility to better ensure that my wishes as expressed herein are respected.

The problem I have with this document is that it not only orders the physician to not provide any medical treatment, other than palliative care, but it also orders the physician to dehydrate the person to death, even if they are not in the dying phase. Read section (a), subsection (ii).

Further to that, the person who sent me this document was a suppoorter of our work and this was the document that his lawyer was suggesting that everyone obtain.

The fact is that many unsuspecting people have obtained, legally signed, and put-in-place, similar power of attorney for personal care documents without knowing how the document will be interpreted.

Further to that: Power of Attorney for Personal Care documents are only legally binding when the person is incapable of making legal decisions. At that point the document can't be amended.

Lifenews Discredits Palliative Care.

Lifenews published an irresponsible and misleading article yesterday by writer Mary Ann Kreitzer that uses friend-of-a-friend conjecture and emotion to discredit palliative care. Like Bill Frist diagnosed Terri Schiavo by video, Kreitzer uses a telephone conversation to determine that her friend's father was "killed" by palliative care.

Irresponsible: because millions of elders are now facing end of life care and planning and require fact-based, scientific, medically sound advice on what their options are for their dying and death. This article plays on fear of death, the taboo of discussing end of life choices, and religious convictions to damage patients' understanding. It is a horrible disservice to seniors.

Misleading: In short she gets all the facts wrong simply because she is not medically trained, is not intimate with the medical facts of the man's death, does not understand that dementia and alzheimers not only damage the mind but the body, has little knowledge of what palliative sedation is, and in short, contributes to fears that elders already have about end of life issues.

I wish we could say that this type of egregious misinformation and fear-mongering was rare, but unfortunately it's not. While 75% of elders say they would like to die at home, 80% die in health facilities, often without any control over their end of life decisions, financial arrangements, or knowledge of patients' rights. Over the past thirty years, the sort of work that Kreitzer is doing with this post has reduced elders to victims, not in control of their end of life decisions or care. Kreitzer demeans the autonomy of elders by reducing their agency in their own health care decisions.

But there's something else at work in this piece: grief is a complicated and nuanced emotional process that, when stymied by blame and anger, however unjust, can damage the grieving of those who have lost a loved one. Kreitzer's damage is not only to those seniors who must face the dying process without guidance and accurate information but to the loved ones who in the wake of death are faced with the work of their own grief.

By using only the barest outline of a man's death, Kreitzer makes the case that the nebulous "culture of death" is out to kill our vulnerable seniors. Nothing could be farther from the truth. Only accurate information, medically sound decisions, advanced planning, and acceptance of impending death will empower our seniors to die the way they want to. Kreitzer deserves grave criticism for working to distort our human right to a good death.

From Lifenews:

I spoke to a friend this morning whose father was murdered by terminal sedation (aka "palliative" care). Her father suffered from Alzheimer's and his mind was pretty well gone, but physically he was in great shape.

He and his wife lived with one of my friend's children who took him for a long walk every day and knew how to manage all his grandfather's moods. They were good buddies. My friend lived nearby and spent as much time as possible visiting her parents and enjoying her father's company.

But the rest of the family (including my friend's mother who had power of attorney) decided to put him in a nursing home where he was difficult to control because he wanted to be released. My friend told me that every time she went to visit him he was trying to escape -- pulling at every door and even the bookcases looking for a way out. Three nursing homes and several months later he pretty much gave up.

When she went to see him he would be sitting in a wheelchair slumped over and drooling. He got an infection and ended up in a hospital "palliative" ward where he was denied food, water, and antibiotics. Within several months, he went from an elderly man who was walking two miles a day with his grandson, to dead from dehydration and terminal sedation. It was Terri Schiavo and Hugh Finn without the publicity.

My friend considered trying to get guardianship at one point, but she was familiar with the earlier cases and knew it would be a lengthy legal battle and the result would be the same. He had also deteriorated so much she didn't think he could recover. With a number of young children still at home, she didn't think she could deal with the fight. So here was a faithful daughter (and her husband) willing to care for both her parents until they died, who had to watch while her faithless siblings and her mom murdered her father.

Welcome to the realities of the culture of death.

Terminal sedation is abortion for the elderly. You have dementia and get pneumonia? Like Rahm Emmanuel says, Never let a crisis go to waste. See it as an opportunity for a quick exit. No antibiotics and terminal sedation. Abortion completed. Your loved one is healthy but brain damaged like Terri Schiavo and Hugh Finn? No problem. Starvation, dehydration, and terminal sedation. Call it late-term abortion.

You think I'm exaggerating? The New York Times ran an article on December 27, 2009 on the practice. It is common in hospice programs. Hurry the patients along for the peace of the family and to empty the bed. Saves everyone anxiety, money, and hassle. Except, perhaps, the patient. But he is drugged so whatever objections he may have had, you'll never have to hear them.

Sometimes, as in my friend's case, though, things aren't that smooth. Far from bringing peace to families it brings terminal strife and family breakdown. And in the case of my friend's mom, will children who killed their father, hesitate at doing the same thing to the their complicit mother? After all, she had no objections to killing dad; so how can she object to her own quick exit? It's for the children (and their inheritance?).

I wish I could say this is the only case I know of the deliberate murder of elderly parents, but it isn't. It's common practice in some hospices with or without the complicity of the families. Situations like my friend's are also becoming more and more common as the baby boomers, who often gave their children nothing in the way of faith, face the results of their hedonistic lives. "Hey, Mom put me in day care for most of my childhood and aborted my siblings; I'll put her in a nursing home and pull the plug as soon as possible." So much easier for everyone.

The worst part, however, is that while the body is being killed, the souls of the killers are dying as well. How does God who said, "Honor your father and your mother," look at the deliberate murder of parents? It is mortally sinful! And that's the greatest suffering for my friend. She would like to see her family in heaven, but fears that this life on earth may be the only common ground they ever share.

Please pray for all those in danger of death today from terminal sedation and for those who will carry it out and enable it. It's a soul-killer for sure! You can call it quick and painless, but in the end the palliative care ward, like the abortion mill, is literally hell on earth.

Justifying the "Bright Line" between the Double Effect and Assisted Suicide.

The University of Toronto Students for Life have been hosting a blog series on euthanasia and assisted suicide in the wake of a visit from Alex Schadenberg, Executive Director of Canada's Euthanasia Prevention Coalition. Here's the lastest, a look at the difference between refusal of treatment and the "double effect."

The USCCB recently changed its directive on refusal of treatment to not include artificial nutrition and hydration, now considered "obligatory" care and not subject to removal, thus rendering advance directives at all 600 Catholic hospitals moot.

“Living is not an obligation. I don’t want to die hooked up to a bunch of machines or forced to stay alive when I know it’s time to pass on.”

There is no legal obligation to receive treatment in Canada. A competent patient or the proxy of an incompetent patient has the legal power to accept or refuse any treatment, or ask that it be discontinued.

Many people don’t understand what euthanasia is. The refusal of treatment is not euthanasia or assisted suicide. It’s the refusal of treatment. That’s a right we affirm; this argument misunderstands the pro-life position.

The withdrawal or withholding of extraordinary or disproportionate treatment, when its burdens outweigh its benefit, is not euthanasia because the intention is not to cause death but to allow the person to die naturally; in euthanasia the intention is to cause death – the patient does not die naturally but rather is killed by another human being before his or her time.

A means/ends/consequence breakdown is useful here. In euthanasia and assisted suicide, the goalmay be to end a patient’s suffering, but a patient’s death is directly sought as the means of ending that suffering. Death is a desired consequence of the act. But when refusing treatment, death is anunintended foreseen consequence. The intent is to refuse treatment, to alleviate pain or undue burden, and the result is that the disease or natural ailment then takes its toll. The ailment causes death, not the act of any person.

It’s the difference between killing someone, and letting nature take its course.

When disproportionate treatment is withdrawn or withheld, the cause of death is the underlying disease or condition; in euthanasia the cause of death is the lethal injection, pill or other means used. There is a great difference between allowing to die and making die.

It’s good practice responding to these points before reading ahead…

Artificial nutrition and hydration are considered ordinary care – not treatment – and must, in principle, be given to the patient. Food and water are basic necessities of life which do not treat any specific condition. A person should never die because they have been deprived of nutrition and hydration. However in certain circumstances, such as near the end of life, the body may not be able to assimilate food and water or the procedures used can be too burdensome to continue. In these situations, artificial nutrition and hydration can be discontinued.

An important qualifier: starving someone to death is not the same thing as refusing treatment (but for exceptional circumstances near the end of life).