A very special report is being released right now at the Boston Public Library from the Expert Panel on End-of-Life Care, a multidisciplinary group of 41 stakeholders, including health care professionals, service providers, policy makers, health care advocates and legislators. They were appointed by the state's Executive Office of Health and Human Services, as directed by the Legislature.
The have done very good work on an important topic. It is thoughtful, practical, and compassionate.
Here are some excerpts from the press release:
Included in the report are the Expert Panel’s professional training guidelines to assist physicians with end-of-life consultations with patients who wish to discuss advanced directives.
The panel identified several essential goals toward achieving the highest quality end-of-life care:
- Inform and empower residents of Massachusetts to understand and plan for end-of-life care;
- Support a health care system that ensures high-quality patient-centered care;
- Promote and support a knowledgeable, competent, and compassionate healthcare workforce;
and
- Employ quality indicators and performance management tools to measure results.
I really like all these, especially the last one. Like all process improvements, if you don't measure, you don't achieve. I also like that the report talks about guidelines, clearly being sensitive to the preogatives of doctors and nurses in their relationships with patients.
Notable quotes from two fine people:
"Any health care system should help doctors and other caregivers ensure that patient's wishes are understood and honored, perhaps most of all in the last phases of life," said Dr. Lachlan Forrow, Director of Ethics Programs at Beth Israel Deaconess Medical Center.
“Meeting with residents throughout the state, it is clear to me they want to talk about ‘a good death,’ and how will we respect and honor their wishes at the end of life," said Jim Conway, Senior Fellow at the Institute for Healthcare Improvement. "Implementing systematically the report’s recommendations will go a long way to ensure we, as a community, do that in partnership 100% of the time.”
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9 comments:
So important -- but it's especially important to inform siblings and children of your wishes. They are a powerful source of ordering everyone to conduct exactly the tests and treatments you want to avoid. God love them, they mean well.
Congratulations to the MA Expert Panel on End of Life care. It looks like we’re making some meaningful progress on this important issue. While I agree that the overall effort should be patient centered to ensure that they get the care they want toward the end of life and don’t get care that they don’t want, the likely happy byproduct of a successful effort here is that it will save money for the healthcare system as well. While, in the end, some hospitals, doctors and drug companies might lose some revenue, it’s good for patients and it’s good for the society and the economy.
This is certainly a more mindful discussion than the 'death panels' scare tactics. However, let me be a bit provocative - what about an assisted suicide law?
I don't live in MA so obviously I am not picking on this state, but I do believe it is something that mindful people should consider - for others who might want the right, if not themselves.
nonlocal
nonlocal –
I think assisted suicide legislation would be a mighty tough sell in most states. I, for one, would be uncomfortable with it.
Here's another take on the subject from the WSJ. The 'Polst" document is an official medical order and thus readily available and enforceable, unlike an Advance Directive:
'Regardless of whether people fill out Polst forms or advance directives, or both, a coalition of health-care groups says it is important for people to make some decisions about end of life wishes and to choose a surrogate who understands their wishes to step in if necessary. The group is promoting April 16 as National HealthCare Decisions Day via its website, NHDD.org. "There is so much fear about having these discussions, when for most people the problems are going to happen when they haven't had these discussions," says Amy Berman, a senior program officer for the John A. Hartford Foundation, which focuses on improving health care for older Americans.'
http://online.wsj.com/article/SB10001424052748703327404576194942197661606.html?mod=WSJ_hpp_sections_health
nonlocal
Barry;
Well, a couple states have managed it. It's like a lot of things - until we start discussing it, the possibility is not even on the table.
My brother with Parkinson's disease, for instance, would like to have this option available without putting his doctor or his loved ones at legal risk.
nonlocal
The Polst or Molst is a wonderful idea. The fact that it is also signed by a doctor as well as the patient gives it more credibility both within the medical establishment and with family members. Hopefully, it is also stored on a registry where it is available to providers anywhere. Everything I read suggests that only about 25%-30% of people have executed even a living will or advance medical directive. When the end of life approaches many patients can no longer communicate at all or, if they can, they may not be mentally competent. Meanwhile, middle age adult children who don’t know what their parent wants and doesn’t want tells doctors to “do everything,” in part, because they haven’t yet come to grips with their own mortality and can’t or won’t let go. It can all be avoided so easily by executing these documents. The patient gets wanted care and doesn’t get unwanted care and, most likely, the healthcare system saves money.
Barry, I think your comment about where the Polst is stored is critical. One of my professional interests has always been how we implement, on the front lines in health care facilities, all the fancy ideas of administrators and medical executive committees which sound so good on paper. Emergent access to such a document is key and explains why a large percentage of DNR orders are never carried out either, for instance. Or, if there is family resistance, the medical personnel just give up. With the Polst as a direct medical order, conceivably there could be consequences for NOT implementing it, changing the default position.
In general, when confronted with a new idea however, it is always useful to ask - how would this be implemented in real life? (The tax code comes to mind.) The answers are not so easy.
nonlocal
Returning to my soapbox on implementation, here is an example of how good intentions can become subverted in implementation: (partial quote only)
Abstract
BACKGROUND: Patients and families commonly discuss end-of-life decisions with clinicians to create a treatment plan based on patient wishes. In some instances, respect for patient autonomy in making choices may create the potential for patient harm. Medical treatments are often performed in groupings in order to work effectively. When such combinations are separated as a result of patient or surrogate choices, critical elements of life- saving care may be omitted, and the patient may receive nonbeneficial or harmful treatment. A partial do-not-resuscitate order may serve as an example.
http://www.ncbi.nlm.nih.gov/pubmed/21057317
(Example: do not intubate)
nonlocal
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