Hot Topics: End of Life Care

Blog Posts (87)

October 22, 2015

Truth Telling In Medicine: Problems Old and New

<p style="font-size: 11.2px; line-height: 19.04px;">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.</p> <p style="font-size: 11.2px; line-height: 19.04px;">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.</p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.04px;">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 <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
August 11, 2015

…So That We Know How to Live

by Craig Klugman, Ph.D.

This Spring Quarter I had the honor of creating and teaching a new course at my university: HLTH 341 Death & Dying.…

July 27, 2015

Medicare’s Proposed Rule Is Just the First Step

<p style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">As Jane Jankowski, DPS, LMSW discussed in her <a href="/BioethicsBlog/post.cfm/medicare-considers-the-value-of-advance-care-planning">last AMBI blog</a> 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.</span></p> <p style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">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 </span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="http://www.legis.state.wv.us/WVCODE/Code.cfm?chap=16&amp;art=30#30">West Virginia</a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"> and </span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="http://aging.sc.gov/SiteCollectionDocuments/L/LivingWill2014.pdf">South Carolina</a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">, are little more than a declaration that no life-sustaining treatments should be provided.  Other states, such as</span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="http://www.michiganlegalaid.org/library_client/resource.2006-07-27.3541829543/html_view">Michigan </a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">and </span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="http://www.massmed.org/Patient-Care/Health-Topics/Health-Care-Proxies-and-End-of-Life-Care/Important-Differences-Between-Health-Care-Proxies-and-Living-Wills/">Massachusetts</a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">, 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.</span></p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; line-height: 19.0400009155273px; font-size: 12px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; line-height: 19.0400009155273px; font-size: 12px;">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 <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
July 15, 2015

Medicare Considers the Value of Advance Care Planning

<p><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">Last week the Centers for Medicaid and Medicare <a href="http://www.huffingtonpost.com/2015/07/08/medicare-end-of-life-counseling_n_7757036.html">announced a proposal</a> that would provide Medicare reimbursement for providers to spend time with patients discussing advance care planning. </span><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">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 <a href="http://www.nytimes.com/2015/07/09/health/medicare-proposes-paying-doctors-for-end-of-life-counseling.html?_r=2">express these things for themselves</a>.</span><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"> 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.</span></p> <p class="MsoNormal" style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">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. </span></p> <p><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;"><strong>The Alden March Bioethics Institute offers a Master of Science in Bioethics, a</strong> </span><strong style="line-height: 19.0400009155273px; color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px;">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 <a style="color: #000099; text-decoration: underline;" href="/Academic/bioethics/index.cfm">website</a>.</strong></p>
June 17, 2015

Can An Advance Directive Ever Justify Cessation of Eating in an Alzheimer’s Patient?

by Craig Klugman, Ph.D.

Margot Bentley did what end-of-life care advocates say we should all do—she completed an advance directive. She wrote hers in 1991 when she was working as a nurse and stated that she did not resuscitation, surgery, respiratory support, or nutrition and hydration.…

May 14, 2015

Raging Against the Dying of the Light

by Craig Klugman, Ph.D.

When do we die? The legal and medical answer is we are dead when we either (a) have experienced total loss of all brain function or (b) cessation of cardiopulmonary activity.…

April 24, 2015

Human Remains for Compost: Repugnant or Resourceful?

<p><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;">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 </span><a style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;" href="http://www.nytimes.com/2015/04/14/science/a-project-to-turn-corpses-into-compost.html?action=click&amp;contentCollection=N.Y.%20%2F%20Region&amp;module=MostEmailed&amp;version=Full&amp;region=Marginalia&amp;src=me&amp;pgtype=article&amp;_r=0">New York Times</a><span style="font-size: 11.1999998092651px; line-height: 19.0400009155273px;"> 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?</span></p> <p><strong style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;">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 <a style="color: #000099; text-decoration: underline;" href="http://www.amc.edu/Academic/bioethics/index.cfm">website</a>.</strong><span style="color: #34405b; font-family: Arial, Helvetica, sans-serif; font-size: 12px; line-height: 19.0400009155273px;"> </span></p>
March 31, 2015

Terri Schiavo: Ten Years Later

by Craig Klugman, Ph.D.

Today acknowledges the tenth anniversary since the final death of Terri Schiavo. Her feeding tube was removed on March 18 and her body took its last breath on March 31, 2005.…

February 9, 2015

Canadian Supreme Court: Legal Assisted Suicide In a Year

by Craig Klugman, Ph.D.

A year from now, all Canadians may have the right to assisted suicide. In February 6, the Canadian Supreme Court ruled “that the prohibition on physician-assisted dying is void insofar as it deprives a competent adult of such assistance where (1) the person affected clearly consents to the termination of life; and (2) the person has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.” In other words, a competent and capacitated person with a serious and unresolvable condition that creates suffering has a right to have assistance to end his or her life.…

January 28, 2015

Still Alice: A Portrait of Familial Alzheimer’s Disease

by Craig M. Klugman, Ph.D.

This past weekend I spent a cold, snowy day in the theater watching the movie Still Alice.…