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Welcome to a new type of post for Pallimed - the monthly open thread.

This will be a monthly post for readers to discuss issues with other readers, request information from other readers or suggest topics for us to cover in upcoming posts. Obviously the subject matter should be somewhat related to hospice and palliative medicine.

We look forward to hearing from you. Just click on comments below.

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My leading candidate for headline of the decade is "Are You Brain Dead? Depends on the Hospital." It is from a news article reporting on a study in Neurology (one of the few studies in the entire medical oeuve of 2008 that we have not blogged on). The study authors surveyed the "Top 50" neurology centers in the United States, as ranked by US News & World Reports, on their institutional guidelines for establishing brain death. Three of the 41 responding institutions do not have guidelines. Of the 38 that do, there was considerable variation in the criteria for determining brain death and more-than-expected variance from the guidelines established by the American Academy of Neurology in 1995 and reaffirmed as recently as 2007. It should be noted that 2008 is the 40th anniversary of the recommendation & criteria for using brain death in potential organ donor situations.

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Two from JAGS on race and end-of-life care (see next post for the second)....

First is an attempt to understand why there are long-standing and persistent racial differences regarding advance care planning and hospice utilization in the US. The study involved older (over 65 years) primary care clinic patients from a single center who were asked a variety of questions about values regarding end of life care and beliefs/attitudes about advance directives and hospice care. ~200 subjects in all; unfortunately only a ~third of eligible subjects participated, making one wonder how much that skews the results.

Besides measuring advance directive completion, they measured (using a variety of scales) attitudes and beliefs about end of life care including about hospice care, treatment preferences at the end of life, spirituality, health care system mis/trust, and beliefs about advance care planning. Consistent with prior studies, African Americans were less likely than white Americans to have advance directives, more skeptical of hospice care, had somewhat more distrust towards the health care system, and were more likely to endorse life-prolonging therapies in the setting of a terminal illness. Controlling for all these findings, they more or less found that it was the aggregate of these cultural values/beliefs that predicted less advance care planning use and skepticism towards hospice and not race per se.

The flip side of that is that African American 'race' in this and prior studies is likely just a proxy for a set of beliefs and values which are more prominent in African Americans than white Americans (although individuals within each group share the full spectrum of those beliefs/values). All fine and good, but what is really interesting about this paper is that in the discussion section the authors deliberately try to move the discussion away from suggesting that it's a 'problem' (as in a health care system/racism/policy/etc. problem) that African Americans as a group use advance directives and hospice care less - that that's more the product of deep-seated cultural values - and that the challenge to the medical community as a whole is to find more culturally appropriate ways to deliver good end of life care to African Americans. A quote:

This work has implications for the development of culturally competent policies and programs that may improve end-of-life care. In this study, African Americans were less comfortable discussing death, more likely to want life-prolonging therapies, and more likely to agree that those who believe in God do not have to plan for end-of-life care; these factors partly explained the relationship between race and possession of an advance directive. Although interventions in church or community settings have increased dialogue about and comfort discussing end-of-life care, many of these programs have not increased the number of African Americans completing advance directives. This is not surprising, because they only partly address potential cultural barriers. Furthermore, given the lack of data supporting the effectiveness of advance directives in improving end-of-life care and the cultural beliefs identified in this study and others, emphasis on the process of advance care planning rather than the completion of documents seems more likely to result in the desired outcome—opportunities for those who want to do so to express their preferences for end-of-life care should they become incapacitated. For African Americans, in addition to community and church-based discussions, culturally sensitive advance care planning should consider the importance of family in decision-making and the value of informal ways of expressing preferences, including oral and written instructions or even deferral of decisions to family, and greater emphasis on understanding and respecting preferences for care, whatever they are and however they are expressed in the context of patients' values and goals.

Rebecca S. Allen, Jessica Y. Allen, Michelle M. Hilgeman, Jamie DeCoster (2008). End-of-Life Decision-Making, Decisional Conflict, and Enhanced Information: Race Effects Journal of the American Geriatrics Society, 56 (10), 1904-1909 DOI: 10.1111/j.1532-5415.2008.01929.x

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The second one about race and end of life care in JAGS is about using 'enhanced information' as an aide in end of life decision making. It involves surveying 78 older community dwelling adults about their treatment preferences in several scenarios (e.g. advanced dementia is described, they are asked would you want tube feeds, CPR, mechanical ventilation, etc.). The intervention is that some patients were given 'enhanced information' which involved detailed descriptions of the interventions and the study was designed to see if that info had any effect on treatment preferences as well as if it decreased 'decisional conflict' within the subject.

I'm not going to belabor the findings other than to say that the enhanced information did have effects, and in fact the enhanced information attenuated African Americans' desire for life-prolonging treatments in the setting of a terminal illness. Interestingly the enhanced information nudged white Americans' towards more life-prolonging treatments. I thought to myself 'that's interesting' and then I read the appendix which contained an example of this enhanced information. Here it is, for mechanical ventilation.

Treatment option—mechanical ventilation

Mechanical ventilation (MV) can be used to assist you to breathe when you can no longer breathe on your own. MV can provide your brain with needed oxygen so that you can maintain your thinking skills and quality of life.

The procedure

This procedure requires surgery called a tracheotomy and a varying period of time in the hospital. A tracheotomy provides surgical access to the trachea to allow oxygen to flow into your lungs. You may have to have a tracheotomy in order to be able to use a mechanical ventilator for weeks, months, years, or even the rest of your life.

Benefits

(1) MV can either assist you to breathe or they can take over breathing for you completely and keep you alive.

(2) Your family may feel better knowing that your breathing is being assisted or controlled by MV.

Risks

(1) Some types of tubes inserted may cause coughing and pain.

(2) Infections (pneumonia, for example) may occur as a result of MV for patients who use MV for an extended period of time.

Alternatives

If you do not choose to have MV, you may not be able to breathe on your own. Lack of oxygen to your brain will cause brain damage that will harm your thinking skills and make your quality of life worse. Eventually, if you do not begin to breathe on your own, you will die.

Ummm.... Helps maintain quality of life? Tracheotomy? The 'alternative' to mechanical ventilation basically says you won't be able to breathe and die. They might as well have said 'YOU WILL SUFFOCATE AND DIE A HORRIBLE DEATH.' I have to admit I'm perplexed by the content of this enhanced information, and still sit here wondering if there's something here I'm missing. Was this an excerpt? Seems like saying 'they hook you up to the breathing machine like in the movies' would have been equally illuminating....

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The New York Times featured an article on color-coded bracelets for quick communication of vital health information. (Also noted on NYT Health Blog w/ comments.) Recent efforts by states to coordinate the bracelet colors of allergy (red), at risk limb (pink), fall risk (yellow) and do not resuscitate (purple) have hopefully decreased confusion for employees who may have recently worked at another institution with a different color scheme.

Apparently* in 2005, a nurse mistook yellow for DNR when it meant restricted limb and a patient nearly died. (*I could not find any news record of this case but the New York Times describes it as notorious. Yes, we sometimes do our own primary research.)

Some of the concern with this new push for standardization is the not-new worry that patients don't want to see DNR on their wrist band, nor do their families.

The nation’s leading hospital-accreditation agency, known as the Joint Commission, has expressed caution about the new system, citing concerns about branding patients by their end-of-life choices, or inadvertently broadcasting those choices to family and friends who have not been consulted. The commission also said that children who do not understand the system had been prone to trade the wristbands like baseball cards.

The branding of patients is a somewhat valid issue but as the article later states most patients are willing to talk openly about their decisions. The article describes them as being proud of their choice. It may be those staff or family who are uncomfortable with the DNR that feel paternal and want to protect the patient by avoiding subtle reminders of what the patient lives on a daily basis. The 'kid swapping bracelet issue' is easily solved by making sure they are on tight enough.

Another interesting quote:

In Arizona, one hospital embossed its purple bracelets with a white dove carrying an olive branch, rather than D.N.R., while another chose the initials A.N.D., for “allow natural death,” as a gentler alternative. Kim Miyauchi, associate nursing director at Kingman Regional Medical Center, the Arizona hospital that uses the white dove, said officials there worried that wearing the initials D.N.R. on one’s wrist was “a little bit harsh,” and also failed to convey nuances best captured in a medical chart, as with a patient who wants medication for heart failure but not to be shocked by a defibrillator. “Sometimes people want varying levels of treatment at the end of life,” she explained. “Sometimes it’s not so clean as just don’t do anything.” (italics mine)

As Drew has said before being ill and dying is not an easy time, so pretending that a change of words or letters may make someone feel less sad diminishes the impact of what caring staff can overcome. Do Not Resuscitate** is explicit in what it sets out to do. Allow Natural Death (AND) could mean a whole number of things, and once it becomes de rigueur, people will be clamoring for another terminology change. And AND resembles 'and' which is a conjunction and can canfound confound a plan. I have seen doctors write "AND" as an order but I truly think this causes more confusion unless there is a set policy about what this means at one's hospital.

The last quote is an important one since it perpetuates one of the biggest stereotypes of hospice and palliative medicine. My job description does not include 'do nothing' for my patients. A whole medical specialty like palliative medicine can not be constructed around 'doing nothing.' Communication, education, symptom control, conserving dignity, advocacy, coordination of care, and so on and so on.

To address the nuances of end-of-life decision making compasisonate conversations followed by clear legible documentation of wishes and goals, followed by clear detailed orders in the medical record is the best solution. A bracelet is a shortcut, and shortcuts have risks but in an emergency this could be vital information to signal a clarification of the DNR order in the chart.

** And to be more explicit, some advocate for Do Not Attempt Resuscitation since outcomes are by no means guaranteed for a survival after the initial resuscitation.

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The Journal of Medical Ethics has a case discussion provocatively titled 'suicide by advance directive.' The case involves a woman who tried to commit suicide by an insulin overdose who was ventilator dependent and in a coma (who had a poor, but uncertain, prognosis of neurologic recovery) who had an advance directive saying that she would not want to be on a vent if her prognosis was poor etc. In fact, she lay her advance directive next to her when she tried to kill herself, and it was obviously ignored by EMS/the emergency department as would be the standard of care with any suicide attempt.

The report analyzes the decision making that occurred, eventually leading to withdrawal of life-prolonging treatments including the ventilator and the patient's death. It's clear to me from the discussion however that it's not fair to label this a 'suicide by AD.' A long, careful decision-making process occurred with the patient's loving family, her doctors, and an ethics team which clarified that the patient would not want to be maintained in such a state under any circumstances. The AD was one piece of 'supporting evidence' for the patient's wishes/values, but it was not applied blindly and without great reservation and careful deliberation. Not intubating the patient in the first place because she had an AD next to her or a DNR bracelet on her may reasonably constitute a 'suicide assisted by an AD' but not this case.

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Cancer has a paper looking at the prognostic implication of physician-patient disagreement about performance status. The data are taken from a several multi-center therapy trials involving ~1600 patients with metastatic lung or colorectal cancer in which patients and physicians independently rated performance status (using ECOG and/or Karnofsky scores). For some reason these data are from trials done in 1987-1990. It's unclear to me why such old data were used...no trials since then employed both physician and patient assessment of functional status?

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by Christian Sinclair

(Note, this post was first written in 2008, links updated 2016, and again in 2024. Please confirm any data here by verifying with your own state voting guidelines - any help maintaining this post is appreciated! -Ed.)

During these feisty political times in the United States, it is important to remember that we should all go out and vote. But it is important to remember there are many people who can't get out to vote on Election Day or may have a short enough prognosis resulting in death before Election Day. Being engaged in the political process and fulfilling one's civic duty may be important roles to be fulfilled for dying patients.

Approximately 5,500 9,491 people die each day in the US and since many states have absentee voting systems in place as early as this week this could be a big impact. 38 days left until Election Day multiplied by 9,491 voters = 360,658 votes! Are hospice patients the new soccer moms?

Ensuring your patient can vote, if that is something they want to achieve before death, is an important function for hospice and palliative care staff. Here are some useful links and tips to consider:

• If you are going to get out the vote with hospice patients, you should ask universally, and not just the patients who have the same political signs in their yard as the bumper sticker on your car.
• If absentee voting is available in your state, pursue it now. Check your state's voting website.
• Know your state law for the validity of a dead person's absentee vote. Some states count an absentee vote from a deceased person if they died before election day, others do not. I have a partial list below, if you do find the answer for your state, please add it in the comments section with a link if possible to a source.
• Know if your state has early in-person voting if that is feasible for the patient.
• Voter fraud can be a felony charge, so if you think you might take advantage of this situation, don't do it.
• There is no formal test of competence in voting (insert political joke about elected representatives here), but there have been some research articles discussing this issue in people with dementia. Here is an updated 2022 article. (BOTH OPEN ACCESS)
• The issue for clearly incapacitated people (such as in the ICU, in a coma, PVS) is not clear. Can voting be a part of your advance directive? I don't think it has been tested in court. Yet.
• In many areas, those under guardianship may not vote. Please check your local laws to clarify.

If you have more questions, I will try to answer them the best I can, please post them in the comments. Many links below are outdated from the 2008 post The links were updated November 4th, 2024, so if you can find any information for your state, share below with links and we will update it. The primary source is the National Conference of State Legislatures. 

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Has your inbox been flooded with ways you can advocate for hospice and palliative medicine issues? Are you having a hard time keeping track of which legislators you have written about which issue? Well for your convenience they are compiled below.

Medicare Hospice Protection Act of 2008 (via NHPCO) (DEADLINE OCT 1)
The Medicare Hospice Protection Act would delay implementation of the phase out of the Medicare hospice budget neutrality adjustment factor during fiscal year 2009.
Write your representative online here.

National Pain Care Policy Act of 2008, H.R. 2994. (via AAHPM)
The National Pain Care Policy Act of 2008 is designed to address many of these barriers by improving pain care research, education, training, access, outreach and care.
Write your representative online here.

Mattie* & Melinda Bill, HR 6931 (via Children's Hospice International)
Increase access to CHI PACC (Children's Hospice International Program for All-Inclusive Care for Children and Their Families). Unlike traditional hospice and palliative care models, a CHI PACC program provides a continuum of care for children and their families from the time that a child is diagnosed with a life-threatening condition — with hope for a cure — through the bereavement process, if cure is not attained.
Write your representative online here.

Readers who write for other blogs are encouraged to link here or cut and paste directly from this to put on your site. Make this a meme.

Feel free to tell your parents, children, your children's friends parents, peers, collagues, enemies, acquaintences, patients, patient's families, mail carrier, flight attendent, guy at the hot dog stand...

For anyone who needs a refresher on how a bill becomes a law...


*Mattie Stepanek, a child famous for his prose in his Heartsongs books

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A large congratulations from Pallimed and the palliative medicine community to Dr. Diane Meier, who was awarded a MacArthur Fellowship this week from the MacArthur Foundation*. The fellowship is also know as the 'Genius Grant' since it is given to accomplished individuals in various fields who demonstrate commitment, creativity, and the ability to inspire others. The MacArthur Fellowship award is a generous unrestricted $500,000 grant.

As the director of the Center to Advance Palliative Care, Dr. Meier has helped many hospitals around the country establish and maintain palliative care teams which has in turn affected probably hundreds of thousands of families and patients, if not more. Her leadership with this program as well as her numerous contributions to the palliative care literature makes her one of the pillars of palliative medicine.

Here is a short video (2:38) from the MacArthur Foundation** featuring Dr. Meier.



At the end of the video clip, Dr. Meier accepts the award graciously on behalf of palliative care and all the people who are making it happen. Congratulations and many thanks for your contributions over the years to the field!

What would you do if you got a Genius Grant?

*For all you NPR listeners out there this is the Macfound.org people.
**Slight criticism of choice of language by the MacArthur Foundation in the comments