Monday, March 1, 2010

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.

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.

Labels: , ,

More Reporting on the New Artificial Nutrition and Hydration Policy.

This time from New Jersey News Room. The word is getting out, but slowly.

The writer, Harris Meyer, does a good job of summarizing the issues though I always want to hear more in these articles about the size of the Catholic health care delivery system and the reasons why these facilities are able to operate outside the established laws regarding artificial nutrition and hydration. It seems no one is willing to ask the difficult questions about how Catholic hospitals are able to establish their own practices outside national law - despite separation of church and state.

Here's a clip:

If a patient or family didn't want a feeding tube "and the reason they don't want it is they basically want to die, then the Catholic institution would explain to them they can't cooperate with that and they would have to go to another institution," said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops' conference, who helped draft the policy.

Experts say no other large health systems in the U.S. have nutrition and hydration policies like those governing Catholic facilities.

Catholic officials have said the directive is consistent with previous doctrine. But the revised language eliminates what many Catholic ethicists viewed as flexibility in its application to patients in a persistent vegetative state. The previous policy said "there should be a presumption in favor of" use of feeding tubes, rather than an "obligation."

Morever, according to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having "chronic and presumably irreversible conditions," though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer's disease, traumatic brain injury and Lou Gehrig's Disease.

"If someone had a stroke and the doctor says he won't die though he may be very sick, then they should give him nutrition and hydration," Weinandy said. "You can't just starve him to death. It's hard to know whether someone can regain consciousness or not."

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. "That gets to be a very, very large number of people," said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

Forrow also said Catholic health facilities haven't met a key ethical test - adequately informing the public of their policy. If they don't do so, "patients and their families will arrive at the hospital in crisis and find that the care they want and need and have a right to as Americans is being refused."

Weinandy said "obviously the public should know what the directives say," and patients and relatives "can easily download the directives or get a copy."

The revised directive arises from statements made by Pope John Paul II in 2004 during the legal battle surrounding Terry Schiavo, the Florida woman kept alive on a feeding tube for nearly 15 years, and from clarifying statements by Vatican officials in 2007.

Sister Carol Keehan, executive director of the Catholic Health Association representing hospitals and other facilities, said the bishops' point is "you don't have the right to just stop feeding them because their life is a burden." But the new policy, in her view, would come into play infrequently, mainly in cases involving a persistent vegetative state. For that reason, said the CHA senior director for ethics, Ron Hamel, "There probably was not much publicizing" of the revised directive by Catholic facilities.

There are more than 600 Catholic hospitals and hundreds of nursing homes and other facilities; the hospitals alone admit nearly six million patients a year. Keehan doesn't see much potential for conflict between patients' and families' end-of-life wishes and the new directive. "Advance directives are held in great respect in Catholic hospitals," she said in a recent interview. "Some might like to say there's a terrible problem, but there isn't."

Most states require honoring a patient's advance directive or the designated proxy's decisions in end-of-life situations — or else transferring the patient to a facility that will honor those wishes. It is against the law in every state to place a feeding tube or provide other medical treatments against the expressed wishes of the patient.

Labels: , , , ,