Topic: End of Life Care
February 12, 2016 | Posted By Claire Horner, JD, MA

When patients lack capacity, physicians look to family and friends to step in and provide consent for treatment on behalf of the patient. These surrogates, whether they were appointed by the patient as their health care agent or become health care surrogates by default under state law based on their relationship to the patient, have the right to receive information related to the care and treatment of the patient and have the corresponding responsibility to make health care decisions for the patient based on either the patient’s previously expressed wishes or her best interests.  What they don’t have, however, is the right to control and direct every minute aspect of the patient’s care in the hospital.  It would take several blog posts to discuss the conflicts that occur between surrogates and health care providers because of this (such as DNR orders, barriers to discharge, and demands for certain medications, to name a few), but perhaps the most concerning example of surrogate over-reach is the issue of inadequate pain management.

The use of pain medication can be difficult for both patients and providers, especially with the rate of opioid abuse in this country. Patients and their families are often afraid of the possibility of addiction, while physicians are reticent to prescribe narcotics for fear of misuse.  Whether or not a patient is a “drug-seeker” is a common question that arises when physicians are deciding what to prescribe. However, in the context of terminal illnesses – particularly at the very end of the illness – the shift in focus from curative to palliative care highlights the need for sufficient pain control in the face of nearly intractable pain.  It is in this context that denial of pain medication, or poor pain management, is most clearly an ethical issue.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

December 8, 2015 | Posted By Bruce White, DO, JD

On Friday, October 31, 2015, the chief medical officer of the Centers for Medicare and Medicaid Services announced a final rule which details how Medicare will pay practitioners to have conversations with patients about how they would like to be cared for at the end of life. Under the regulation, the patient is not obliged to have these conversations after a terminal diagnosis is made, or shortly before death is anticipated; the conversations may take place at any time, even before the patient becomes ill. The conversation may include discussions about life-sustaining treatments before they may be necessary, and about advance directives and the identification and appointment of a legally authorized representative to participate in the shared decision making progress if the patient were to lose decision making capacity. The rule, which will take effect in January 2016, creates new codes for reimbursement under the Medicare physician fee schedule.

It may seem remarkable that there should be any question about reimbursement for these often-time-sensitive, patient-directed conversations or discussions at all. But because Medicare payments have traditionally been tied to physicians completing and documenting finite “tasks” or “procedures,” these conversations have been “bundled” with other inclusive duties or responsibilities (such as taking a history or performing a physical or developing a treatment plan). The idea that Medicare should pay specifically for the service comes from the belief that if physicians received fairer compensation for providing the conversation and discussion, they would be better incentivized to comply. (Of course, this may or may not be the case, since many physicians clearly have been doing this all along as evidenced by the increased referrals to palliative care and hospice providers and services over the years.) But from 2013 Medicare data about terminally ill cancer patients, only about 47% of these patients receive hospice care, and the average length of stay in hospice is about 17 days. The statistics vary greatly from state to state with the better hospice and end of life care being provided in the Pacific Northwest and the worst in Alaska, Florida, North Dakota, and New York.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

October 23, 2015 | Posted By Wayne Shelton, PhD

The issue of truth telling in medicine was a lively concern in the early days of modern medical ethics during the 1970’s. A new moral awareness had emerge that provided a clear moral rejection of the paternalistic approach taken in the physician-patient relationship that prioritized the traditional values of beneficence and non-maleficence over truth telling. Of course the key development that fueled this new moral perspective as well as the growing passion for medical ethics was the newfound sense that arose beginning in the 1960’s that patients with capacity have a fundamental right both to refuse unwanted treatment and give voluntary informed consent to treatments they were considering. It became obvious to students of medical ethics that if patients are to be able to exercise their right to give voluntary informed consent they must receive a full and accurate disclosure of the relevant information necessary for them to make a decision.

Up to the early 1960’s, patients coming into the health care system very well may not have had an opportunity to give voluntary informed consent. Giving patients this opportunity just wasn’t part of the medical culture. In the early 1960’s it was common for oncologists to not disclose a diagnosis of cancer; by the late 1970’s there was almost universal agreement that full disclosure was the expectation. The full moral force of the principle of respect for patient autonomy happened relatively quickly, especially after the Belmont Report of 1978, which articulated the basic principles of medical ethics (though non-maleficence was subsumed under beneficence). There is no question that the physician-patient relationship has been evolving ever since with new levels of expectations and involvement of patients and their surrogates. There is now universal agreement that physicians are expected to be truthful to patients and accurately disclose their medical condition, including diagnosis and prognosis. Without this first basic step of truth telling in disclosing the medical facts to the patient about their condition, patients cannot exercise their right to express their preferences and wishes about medical treatment and care goals, and specially give voluntary informed consent to medical interventions to treat their condition.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

July 28, 2015 | Posted By Claire Horner, JD, MA

As Jane Jankowski, DPS, LMSW discussed in her last AMBI blog posted on June 16, 2015, the proposed rule to reimburse providers for conversations with patients about advance care planning takes a positive step toward educating patients on end-of-life medical considerations by incentivizing doctors to take the time to address these issues in the clinical setting.  Assuming that such reimbursements depend only on raising the topic of advance care planning with patients and not on the content of a patient’s choices (such as whether or not a patient chooses to forego treatment), encouraging health care providers to discuss health care decision making in advance with patients can go a long way to support patient autonomy and provide helpful guidance to surrogate decision-makers when a patient lacks capacity.  Doctors often cite lack of time as a reason why they do not address advance directives in the clinical setting, but this rule would compensate doctors for their time, allowing them more flexibility in allocating time to address these issues.  However, the proposed rule does nothing to ensure that the providers having these conversations are equipped with the proper tools and training to do so.

Advance directives, although they address the provision of medical treatments, are legal documents that can be complex and far-reaching, and therefore are not necessarily self-explanatory to patients or providers.  Many states offer a statutory form advance directive as an example, but all too often these forms may be merely printed by a provider and given to patients to sign without sufficient explanation.  These forms vary in their scope, but some sample living wills, such as forms from West Virginia and South Carolina, are little more than a declaration that no life-sustaining treatments should be provided.  Other states, such asMichigan and Massachusetts, have no law giving legal recognition to living wills at all.  It is possible that patients may be given forms such as these and not understand that they have the option to declare that they wish to receive particular life-sustaining treatments if they are terminally ill.  It is also possible that patients who do not want to limit treatment will decline to sign any advance directive at all, believing that such documents serve only to support a decision to forego treatment at the end of life, and not a decision to receive some or all interventions.  In such situations, merely starting the conversation may not be enough to help patients effectively articulate their wishes, whatever those wishes may be.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

July 16, 2015 | Posted By Jane Jankowski, DPS, LMSW

Last week the Centers for Medicaid and Medicare announced a proposal that would provide Medicare reimbursement for providers to spend time with patients discussing advance care planning. Though some have argued that this process will carry an inherent bias toward non-treatment, the purpose of such conversations is to seek direction from patients about preferences, values, and expectations should they lose the ability to express these things for themselves. While many persons who articulate their treatment preferences indicate the desire to forego aggressive intervention, this is hardly unanimous. There are plenty of folks who want all possible treatment offered to sustain life. The point of having discussions with healthcare providers is to determine what any given individual prefers.

Acute care providers have long been left with challenging dilemmas when patients are unable to communicate their healthcare goals, and the default is to treat and often treat aggressively. When a patient arrives to an acute care setting with documentation of preferences for treatment, interventions and goals can be set based on the individual’s prior wishes – whether this is to sustain life using any possible technology, or to allow a natural, uninterrupted dying process. The default of treating when there is any doubt will not change, but the opportunities for patients to discuss and document their own preferences will be enhanced with this legislative support. Providing muscle in the form of funding for these important conversations will only encourage more of a good thing. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

April 24, 2015 | Posted By Jane Jankowski, DPS, LMSW

I am a lousy gardener. Just this year I am considering a small attempt at growing a few vegetables organically in my backyard. Maybe it was the long winter, maybe it is a drive to live more sustainably, maybe it is the challenge of overcoming decades of plant growing failures. After carefully selecting a few packets of easy to grow seeds and starting a few slow-growers inside, I have turned my attention to creating the best growing environment for these fragile plants. Part of this effort includes learning how to create compost from kitchen and yard waste materials. While I search for a suitable compost bin to take position behind the garage, I am diligently collecting fruit cores, egg shells, coffee grounds, and discarded greens in airtight containers in my fridge. Researching my options, I stumbled across an article that had me doing a double take, “A Project to Turn Corpses Into Compost” in the New York Times online. I gasped in horror. Could this possibly be an ethical option for burial? Could this be legal? Was this environmentally safe? Was this a joke?

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website. 

November 13, 2014 | Posted By Michael Brannigan, PhD

Reminders of our finitude always lurk close by, like Ezekiel Emanuel's article in last month's Atlantic, "Why I Hope to Die at 75." The head of the Clinical Bioethics Department at the National Institutes of Health gives reasons for not living beyond 75: inevitable decline, disability, incapacity, and diminishment of "creativity, originality, and productivity." According to Emanuel, we wish to be remembered for our good years, prior to decline.

There are grains of truth here. Many of us "die" well before we are officially declared dead. I've seen patients kept alive for far too long in permanent vegetative states, while family dynamics, emotions, finances and scarce medical resources are depleted. We pay a high price for medical "progress." I also know thriving, vibrant elderly, themselves significantly disabled and incapacitated.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

November 6, 2014 | Posted By Bruce D. White, DO, JD

The cover story of the October 27, 2014, issue of PEOPLE Magazine featured Brittany Maynard, a 29-year-old Oregon woman with terminal brain cancer. In the article, Ms. Maynard announced that she would end her life on November 1, 2014, on her own terms, availing herself of the physician-assisted suicide option under the 1997 OregonDeath With Dignity Act (DWDA). As planned, and according to her own schedule and timetable, she died peacefully at home – surrounded by family and friends – on Saturday, November 1. She had signaled earlier in the week that she might delay taking her own life, but in the end, it occurred as she originally planned.

In electing assisted suicide, Ms. Maynard said, “I’m choosing to put myself through less emotional and physical pain.” She continued, “I don’t want to die, but I’m dying. My cancer is going to kill me, and it’s a terrible, terrible way to die. … When I look at both options I have to die [dying from the cancer versus dying from an overdose], I feel this [a fatal dose] is far more humane.” But rethinking the possibilities after developing a rather extensive plan in orchestrating one’s death with a terminal illness is not that unusual either. Roughly 40% of those who obtain the lethal doses of medicine under Oregon’s DWDA in the end die not from suicide but disease. According to an article in The New Atlantis, written to report a 10-year experience under the DWDA, author Courtney Campbell wrote, “In ten years, 541 Oregon residents have received lethal prescriptions to end their lives; of this number, 341 patients actually ingested the drugs.”

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

September 4, 2014 | Posted By Luke Gelinas, PhD

There has been a good bit of debate lately in bioethics circles over the concept and proper definition of death.   The disagreement is between those who think that the cessation of brain activity or ‘brain-death’ is sufficient for death, on the one hand, and those who think that brain-dead patients whose circulatory systems continue to function are still alive, on the other.  Consider, for example, the recent tragic case of Jahi McMath.  McMath suffered complications from a surgery to correct sleep apnea which resulted in cardiac arrest and her being placed on a ventilator.  Shortly after physicians at Oakland Children’s Hospital pronounced her brain-dead and so legally dead.  Her family, however, disagreed, and appealed to the courts for Jahi to be maintained via mechanical ventilation and PEG tube.

Although Jahi’s family disagrees with the claim that she is brain-dead (insisting that she is merely ‘brain-damaged’), suppose the Oakland physicians are correct in their diagnosis of brain death.  Nonetheless, even after the pronouncement of brain-death Jahi’s body continued to exhibit the sort of homeodynamic equilibrium—at least for the time being, and with assistance from mechanical ventilation and other life-sustaining interventions—characteristic of living organisms.  It was warm to the touch; her heart continued to pump blood through her veins; and so on.  Indeed the bodies of brain dead patients have in some cases remained functional for weeks and even months, performing such surprising feats as undergoing puberty and even gestating fetuses. This has led certain physicians and philosophers to question whether brain death is really sufficient for death.  Patients who are truly dead, after all, could not be warm to the touch or gestate fetuses.  Could they?  

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website. 

May 22, 2014 | Posted By Jane Jankowski, DPS

The seventh annual National Healthcare Decisions Day (NHDD) was held on April 16th of this year, and events at national, state and local levels were held to educate people about the importance of advance care planning and encourage participants to complete advance directives. Providing resources and information that drives home the message about how important it is to let others know one’s preferences for healthcare and end of life care is intended to promote conversation and documentation of these wishes which are then implemented when the individual is no longer able to express preferences for themselves. But does it do enough to generate interest in those who prefer to avoid such unpleasantries?

Repeated studies show that advance directive completion rates are low in the US. People simply do not like to talk about end of life, and it is not clear that the NHDD, however well intended, is making the topic any more palatable. Designating a day to recognize the importance of advance directives is an important start, and the materials are often excellent. Five wishes, for example, gives a carefully crafted set of questions to help people thoughtfully consider what matters most to them when it comes to medical intervention, particularly in the end of life context. Still, this only works if people come to the table for the conversation.

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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