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A Future with More Choices

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The voter-approved Death with Dignity Act takes effect on March 4. Robb Miller of Compassion & Choices of Washington writes in the Bellingham Herald about the kinds of questions that patients should be asking their care providers now if they are considering using this new law.

The University of Washington and Harborview Medical Centers have already decided to participate in the program, but other care facilities around the state likely won’t. Either way, I’m optimistic that Washington will experience the same improvements in terminal care that Oregon has had. As Robb writes:

The act’s benefits will extend well beyond the terminally ill. In Oregon, the law spurred conversation, education and improvements in end-of-life care across the board. Oregon experienced dramatic increases in those who died at home rather than in hospitals — something almost all of us prefer. More patients were referred to, and entered, hospice care, and did so earlier, receiving benefits that are helpful to all facing the end of life. Better use of pain medication resulted from more open and frequent conversations with physicians about end-of-life care.

This is one benefit of allowing the choice of death with dignity that I didn’t touch on much during the campaign. For organizations that oppose this choice for moral or other ethical reasons, they’ll be motivated by seeing their patients going elsewhere to choose this option to focus more energy towards improving end-of-life care.

No one intends to force physicians or care organizations to participate in this program, but that doesn’t mean that they won’t benefit from it. Giving people greater choice over their own medical decisions ultimately forces all health care providers to get better.

Comments

  1. 1

    A promise of “improvements in terminal care”? Gee whiz, that’s great, but what about care in general?

    What a weird priority. I can only conclude that the motivation is political, and not really about health care at all.

    Don’t tell me, let me guess. You decided to trot this out after reading Joel’s Plan B column.

  2. 2

    @1
    A promise of “improvements in terminal care”? Gee whiz, that’s great, but what about care in general?

    Well, there are a large number of structural changes that have to happen in our health care system to improve care in all areas, but I strongly believe that care improves when people have more choices. This isn’t just true for this particular case, it’s true in nearly every case. Whatever improvements that the Obama team come up with will likely fail or succeed based upon how well that’s understood.

    What a weird priority. I can only conclude that the motivation is political, and not really about health care at all.

    It’s both. And the reason that Death with Dignity improved end-of-life care in Oregon is because focusing on people’s rights within a health care system improves the system.

    Don’t tell me, let me guess. You decided to trot this out after reading Joel’s Plan B column.

    I haven’t read that yet (although I saw Bruce Ramsey’s response to it, so I have a good idea what he wrote).

  3. 3

    I can’t wait for the trolls to put themselves out of their (and our) misery.*

    * Just kidding! Ann Coulter joke.

  4. 4

    Robb’s propaganda aside, I would challenge him or Lee to come up with any hard evidence for the supposed beenficial effects of the Oregon law. The fact is the law is little used in Oregon and most data I have read says it has little effect ione way or the other.

    I attended a meeting at the UW Med Center on implementation of this law. I have reviewed that meeting over at SJ, but in terms of Lee’s post there are a number of things DwD proponents could do at this stage that might help make the law more effective here. All of these were addressed at the UW meeting:


    1. composition of the cocktail    . Apparently the cocktail is a sleep inducing and respiratory depressing cocktail that is difficult and perhaps painful to ingest. Moreover the requirement of self administration rules many of the patients who likely would be most appropriate user of this law.

    The pharmacologist suggested that successful use of the cocktail may require other drugs to make it easier to drink.

    Concern was expressed that other formulations ought to be considered.

    2. problems with cause of death. The law “defines” cause of death. Aside from a real worry that this could distort scientific data, concern was raised that this opens a potential for murder. The only defense the law offers against misuse of the cocktail is the presumption that no one would benefit from killing the patient.

    Moreover, since use of the cocktail does not require witnesses OR a public record, a Medical Examiner at the meeting expressed concern that he would have to define a DwD as suicide (or murder) unless the act is amended to make the record accessible to the medical examiner. The law explicitly prevents such changes by regulatory agencies.

    3. The law is very little used in Oregon. If you support the idea of DwD, lack of use in Oregon is a concern. Reasons for this are unclear but may include ethical issues for physicians, loss of privacy for the patient, unpleasantness of the cocktail (see above). Far more patients choose the option of palliative pain relief .. a treatment resulting in relief form suffering but also death, than do DwD.

    4. The issue of HMO use of the DwD to cut costs remains a concern. This issue has arisen in a small way in Oregon but a similar issue is now a major problem in Britain. In Britain terminal therapies are appraised on a cost basis vs. how many weeks of life is gained.

    The DwD law may have to be modified so that care givers are not encouraged to choose this cheap option vs options that prolomng life.


    5. Ethical Issues for Physicians     Can one legislate ethics? Conflicts with the Hippocratic oath were discussed as well as the suggestion that the law defines DwD as a therapy. This issue may be why few physisicans choose to go this route in Oregon.

    The issues of I-1000 leading to possible persecution of doctors was discussed at the eeting as well. The attorneys running the meeting expressed the hope that existing practice will persist and physicians who choose palliative terminal care .. not the great majority even in Oregon .. will not be challenged by law suits from the right to life side.
    ******************************

    As a UW citizen, I was greatly impressed with the compassionate, ethical and practical discussion of this difficult issue.

  5. 5

    Lee

    the reason that Death with Dignity improved end-of-life care in Oregon is because focusing on people’s rights within a health care system improves the system.

    Prove it.

  6. 6

    Nice writeup Lee! Thanks

    Lost my older Sister lastnight, so not emotionally able to get in the discussion at this time. But still, I think you’ve given a good argument which I was trying to convey when we were trying to get DwD passed by the Enlightened folks.

  7. 7

    The amount of electrons spilled on this issue here at HA is all out of proportion to the number of folks who might use this law. What is the benefit to HA for all the continued writing about this?

  8. 8

    @5
    Link

    The issue raised around palliative care is whether this type of care was improved by the enactment of the Death with Dignity law. In order to determine the factual basis, this office interviewed Ann Jackson, Executive Director, Oregon Hospice Association (OHA), and a member of the Task Force to Improve the Care of Terminally Ill Oregonians. Ms. Jackson was asked to evaluate the impact the Oregon Death with Dignity Act (the Act) has had on palliative care services in that state.

    Ms. Jackson found that after the law was passed, hospice nurses reported that physicians in Oregon were doing better at managing pain. More physicians attended continuing education classes in palliative care after passage of the Act than before. These classes were offered by Oregon Health and Science University (OHSU) which trains medical students, interns, and residents in end-of-life care. Ms. Jackson also determined that prior to 1994, hospice organizations which sponsored pain programs for physicians in 2001 in eastern Oregon were not well attended by area doctors.

    Oregon has a strong history of palliative care. OHSU’s inpatient palliative care team was developed around 1994. In Oregon, the law allows hospice organizations to provide palliative care as well as hospice care. The Oregon law allowing advanced directives was passed in 1977. Oregon was the first state to combine advance directives and health care powers of attorney and remains among the least restrictive. Utilization of advance directives in Oregon is believed to be the highest in the nation. A 1997 study revealed that two-thirds of Oregonians had an advance directive at death, and 85% of families believed the deceased’s wishes were respected. Oregon developed physician orders for life sustaining treatment beginning in 1992. When the Physician Orders for Life Sustaining Treatment (POLST) is in use, respect for wishes increases to virtually 100%. Recent studies indicate that advance directives elsewhere in the country are not a factor in the kind of care a patient receives.

    Ms. Jackson also indicated that the rate of assisted suicide has been roughly 1/10th of 1%. It is Ms. Jackson’s opinion that assisted suicide “is not disproportionately used by minorities, people in rural areas, the poor, the uneducated, or the uninsured. There are no places in Oregon where care is not accessible. The educated appear to have better access to information. There is no evidence to suggest that anyone has been coerced into using it. People who are depressed do not use it, probably because depression makes it difficult to carry out many actions. High hospice utilization also means that mental health is constantly monitored by hospice social workers. There have been no botched cases. There have been no calls to 911 related to the use of medication. There has not been a migration to Oregon. Opponents often state that it would be essential to have the kind of infrastructure that Oregon had when such a law is considered. I think the law has been a catalyst in many respects in Oregon, even though we already had good palliative care here.”

    Link

    Oregon physicians report that they are more aware of their terminally ill patients’ needs since the state’s Death with Dignity Act was passed in 1994.

    Newly published results [1] from a 1999 survey revealed that 76% of Oregon physicians whose charges included terminally ill patients tried to learn more about palliative care after the act was passed. Sixty-nine percent of these physicians said they had also worked since 1994 to improve their ability to identify depression and other psychiatric disorders.

    Link

    Given the predictions of both the ODDA’s original supporters and opponents, one might be inclined to ask not why are some terminally ill patients seeking recourse to physician-assisted suicide, but rather why aren’t more of them doing so? In some years, and in some cases, the prospect of federal intervention may have had a kind of “chilling” effect—if not necessarily among patients requesting such assistance, then on willing physician participants. There may also be a general demographic factor at work: younger persons may be more willing to support physician-assisted suicide than elderly persons who may be staring their own mortality, or that of loved ones, in the face.

    However, a likelier explanation may be that the ODDA served as a catalyst to improved end-of-life care among Oregon practitioners—including the increased use of hospice and palliative care, and the easing of restrictions on the drugs practitioners could provide to relieve pain. This is a very significant possibility, because it implies that ensuring a dignified death may not be a matter of changing the laws so much as a matter of changing medical practices and professional education. Moreover, it suggests that, for most people, a pharmacologically-induced death is not a precondition of a dignified death, nor that the possession of a right entails its subsequent use.

    Link

    I have testified before, and it bears repeating: I opposed physician aide in dying both as an Oregon voter and as a senator. As the former Director of the Oregon Gray Panthers I witnessed first hand how many poor and vulnerable individuals receive inadequate health care. I worried primarily about the adequacy of the Oregon ballot measures’ safeguards to protect the poor elderly, and as a result, I voted against the Oregon ballot measure – not once, but twice as a private citizen.

    Despite my personal objections, I firmly believe that my election certificate does not give me the authority or the right to substitute my personal and religious beliefs for judgments made twice by the people of Oregon. I will continue to strongly oppose any legislative or administrative effort to overturn or nullify the will of Oregon’s voters on this matter.

    Had Oregon acted hastily or without thorough examination and debate, I might not be in a position defend the Oregon law. No one can accuse Oregonians of acting precipitously in approving the measure: the voters of Oregon did so only after two lengthy and exhaustive debates that dominated water cooler and dinner table conversation for the better part of two years.

    The issue of physician aid in dying is settled as far as my state of Oregon is concerned. My state has endured two legal ballot initiatives, court challenges to stop the implementation of the law, attempts in Congress to overturn the law, an attempt to overturn the law through administrative action by the Federal government, and, most recently, a challenge that went to the U.S. Supreme Court. Each time, the will of a majority of Oregonians prevailed.

    During the eight years the law has been in effect, its opponents have combed through the law looking for possible pitfalls to exploit. However, the law still stands.

    During the eight years the law has been in effect, its opponents have warned there would be abuses and a stampede to Oregon. The law has not been abused. In fact, over eight years, an average of about 30 Oregonians a year have used lethal prescriptions. This, of course, is a tiny fraction of Oregonians who faced terminal illness during that time.

    While I do not know how I would vote if the issue were to appear on the Oregon ballot once more, I believe it is time for me to acknowledge that my fears concerning the poor elderly were thankfully never realized, and the safeguards appear to have worked quite well in preventing potential abuses.

    What is often not discussed by opponents of the Oregon law is the Oregon Death With Dignity Act has brought about many improvements in end of life care in Oregon. Pain management has improved. My state remains the only state to discipline a physician for the under-treatment of pain. However, perhaps the most important side effect of the law is that families, health professionals and patients know they can, and should have conversations about how they want to die and what their wishes are concerning treatment.

  10. 10

    @8 Tx for the posts

    I-1000 is the law and now it needs to be implemented well and, I hope, a lot better than it has beenn in Oregon.

    However, none of the posts come anywhere near “proving” that I-1000 has caused an improvement in care in Oregon. Do you really think there is any data that terminal care or care of the elderly is better, because of this law or for any other reason in Oregon than in Washington?

    It seems to me that the law has passed and now the issue, unless one is an morally opposed to the law, is to see how it can work best here. I would really like to see the proponents show that kind of commitment along with the sort of impressive people working on the issue at UW.

    Here are a few examples of places I think folks like you could have a good impact:

    1. Rule Making success or failure, the new law will be greatly shaped by how it is implemented. I1000 was written is a very restrictive manner.

    The issues raised by the Medcial Examiner at the UW meeting are real and may require the law to be revised to assure that his importnat work is protected.

    2. Access although usage of the law in Oregon is quite low, those who are using it seem skewed to the more affluent part of society. While this si likely the result of social issues, eg middle class education, I would hope that the access here would be more even handed..

    3. Pharmacology I I assumed that the cocktil was an analgesic. I am familiar with the effects of similar drugs in animals and am somewhat concerned that this cocktail may be a poor choice. In part this results from the law’s requirement for self administration and a one recipe fits all patients concept. That requirement apparently does inhibit people from getting the help they may need to use the cocktail. The lack of analgesics also raises concerns about suffering that may continue even when a patient is not awake.

    4. HMO abuse I know you pooh poohed this and I do agree that this has not been a problem in Oregon, however the times are achanging.

    I know that some groups are already trying to bring England’s laws here. These laws allow the government, or in our case the insurance, to determine the worth of someone getting another few weeks or months of life vs. the cost of a drug or therapy. What worries me is the potential for saving money, a LOT of money, by encouraging use of the cocktail vs expenditures that easily can run into the hundreds of thousands of dollars.

    Perhaps we are on the same side of this?

  11. 11

    I know an older man who has been charitable – both in money and in giving of his talents as a physician. Now, he is facing a disease of his brain that causes dementia. No matter how much his family advocates for him, there are people that see this charitable physician as a burden to society at this stage in his life. Some of his fellow physicians have suggested drugging this patient up so that he is not a nuisance. They don’t understand the need to treat this older physician with the same dignity that the older physician himself gave to his patients. Treatment choices already have too many options with blurry ethical lines.

    Don’t pretend that life ending cocktails are anything but suicide or assisted murder. I wonder how much experience you really have had with people who are dying. How much experience do you have Lee, with making every possible attempt to help others maintain dignity? Dying via a cocktail is not dignity. Is this just another column that you have written about the legalizing drugs?

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