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Ethical Issues in End of Life Care

This module covers some of the very basic ethical dimensions of caring for patients at the end of life.

WATCH: Begin by watching this Mediasite recording which will introduce many of the key terms, including: medical futility, withdrawing and withholding life sustaining treatment, aid in dying, euthanasia.

READ: now that you’ve had a brief introduction of the terms, it is time for a deeper dive. Start by taking a deeper look at “futility” with the following article: Ethics in Medicine article “Futility”  http://depts.washington.edu/bhdept/ethics-medicine/bioethics-topics/detail/65. This term is used frequently in medicine, but there is much debate about the usefulness, accuracy, and potential bias that may come with the terminology.

READTomlinson, T & H. Brody. Futility and the Ethics of Resuscitation. JAMA.1990;264:1276-1280.This article is older, but the issues it expresses continue to ring true today, especially as medical technology continues to advance, bringing with it new versions of old ethical issues.

CASE ANALYSIS: now it is time to take what you have learned so far and dig into a case.

CASE STUDY

**Assume daughter is the legal next of kin; that Mrs. Smith does not have advance directives, & that Mrs. Smith and her daughter have never discussed Mrs. Smith’s wishes under such circumstances. Also assume there is unanimous agreement among treating team/s regarding recommendation for DNAR, etc. Limit your response to the question of DNAR**

Mrs. Smith was 46 when she suffered a cardiac arrest at home. Her 20-year-old daughter was with her at the time and called 911. Mrs. Smith was resuscitated by the paramedics and rushed to the nearest hospital, but had suffered severe loss of oxygen to the brain during the episode. She was admitted to the intensive care unit (ICU) and required intubation and mechanical ventilation. An EKG revealed that Mrs. Smith had long QT syndrome, which her daughter said had never been diagnosed. Her daughter insisted that “everything be done” for her mother.

After 2 months in the ICU, Mrs. Smith’s brain functioning had not returned or shown improvement; she had not awakened or been conscious of where she was or who was in the room. Mrs. Smith’s care had been complicated by infections from the intravenous lines into and from her body, kidney failure and the need for dialysis, and worsening heart function that required an intra-aortic balloon pump. Her physicians judged that further treatment, especially CPR, would be futile; it was highly unlikely that Mrs. Smith would leave the hospital alive, or, if she did, it was likely that she would return within days or weeks. Mrs. Smith was too sick to be placed in an outpatient center and remained in the medical ICU.

The medical team, treating complication upon complication, believed they were not helping Mrs. Smith heal in any way. They felt that continuing aggressive treatment violated medicine’s fundamental “first-do-no-harm” precept. When end-of-life care measures such as comfort care, withdrawing treatments, or assigning do-not-resuscitate status to Mrs. Smith were suggested, her daughter became extremely upset, saying “My mom gave me life, how can I take hers away?” At one point her daughter broke down and said, “I would rather visit my mom in the hospital than in the graveyard.” (Prager, K. Virtual Mentor;  AMA J of Ethics Dec 2013 15:12:1022-1026)

Consider the following questions. 

  1. Is CPR medically futile in this case? By which definition of futility?
  2. What actions should the physician take to provide support to Mrs. Smith’s daughter while also encouraging withholding/withdrawal of some medical interventions?
  3. If Mrs. Smith’s daughter and the physician cannot come to agreement, should CPR be withheld over the objections of Mrs. Smith’s daughter? Why or why not?

 

 


If you’re interested in reading more in this area, here are some recommendations (not required)…

  1. Back, AL & RM Arnold. Dealing with Conflict in Caring for the Seriously Ill: “It Was Just Out of the Question”JAMA 2005. 293:11, 1374-1381.
  2. Aid in Dying statistics at https://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct

Watch the Experts: Justice in Healthcare: Bedside Rationing

WATCH the experts respond to the case from Satel and Aronson (2008) “Transplant Tourism: Treating Patients when They Return to the U.S.” American Medical Association Journal of Ethics 10(5):271-277. (https://mediasite.hs.washington.edu/Mediasite/Play/4cb3214702c1459d90e52d85e4187b491d)

Mr. Lawrence, a 50-year-old man with diabetes, is on dialysis for chronic renal failure and on the waiting list for a kidney transplant. Because he is in relatively good health, he is low on the list. His physicians advise him that he could be on the list for up to 3 years and that his health during that time would not be jeopardized, aside from the risks and inconveniences associated with long-term dialysis. Mr. Lawrence is divorced and on bad terms with his ex-wife; he has no children and has contacted his sister and her family to see if any of them could be a living donor. His sister is obese, at risk for diabetes, and is not a suitable donor candidate; no other family members or friends are willing to consider donating a kidney to Mr. Lawrence.

Unable to find a living donor and dismayed at the thought of remaining on dialysis for years, Mr. Lawrence decided to use his financial resources to purchase a kidney and undergo a transplant in China. He spent 2 months in China after the surgery, where he was cared for by a local transplant team that provided postoperative care, including monitoring his renal function and managing his immunosuppressant medications. The surgery occurred without any significant complications, and Mr. Lawrence’s recovery was excellent.

A month after his return to the United States, Mr. Lawrence ran out of the medications that his doctors in China had prescribed, including his immunosuppressants. He knew that failing to take the medication could cause graft rejection, so he made an appointment with Dr. Roberts, a nephrologist at a local academic center who specialized in care of renal transplant patients. Dr. Roberts was aware that many of the organs secured in China came from executed prisoners who did not always consent to organ donation. Further, Dr. Roberts was wary because purchasing organs was illegal in the U.S. Having worked in the transplant field for several decades and witnessed numerous changes in the regulations about and care of transplant patients, Dr. Roberts understood how difficult it was to secure an organ, but didn’t want to be perceived as condoning Mr. Lawrence’s actions.

  • How would you frame the central ethics question in this case?
  • What are the key features of the case that would guide an ethically appropriate response from your perspective?
  • What might make this case challenging from your perspective?

 

Justice in Healthcare: Bedside Rationing

Justice in healthcare is a substantial part of ethics in medicine, here we will cover some of the distinctive aspects of justice-based concerns and some basic ethics language to help wade through these interesting ethical issues.

READ: this short piece by Dr. Jonsen and Dr. Edwards goes into some detail about resource allocation in the medical setting.

Now start to apply what you’ve learned. This reading provides some preliminary perspectives on a case of transplant tourism. This is just one among many forms of distributive justice where we see the ethical tensions in rationing at the bedside.

REVIEW THIS CASE: from Satel and Aronson (2008) “Transplant Tourism: Treating Patients when They Return to the U.S.” American Medical Association Journal of Ethics 10(5):271-277.

Mr. Lawrence, a 50-year-old man with diabetes, is on dialysis for chronic renal failure and on the waiting list for a kidney transplant. Because he is in relatively good health, he is low on the list. His physicians advise him that he could be on the list for up to 3 years and that his health during that time would not be jeopardized, aside from the risks and inconveniences associated with long-term dialysis. Mr. Lawrence is divorced and on bad terms with his ex-wife; he has no children and has contacted his sister and her family to see if any of them could be a living donor. His sister is obese, at risk for diabetes, and is not a suitable donor candidate; no other family members or friends are willing to consider donating a kidney to Mr. Lawrence.

Unable to find a living donor and dismayed at the thought of remaining on dialysis for years, Mr. Lawrence decided to use his financial resources to purchase a kidney and undergo a transplant in China. He spent 2 months in China after the surgery, where he was cared for by a local transplant team that provided postoperative care, including monitoring his renal function and managing his immunosuppressant medications. The surgery occurred without any significant complications, and Mr. Lawrence’s recovery was excellent.

A month after his return to the United States, Mr. Lawrence ran out of the medications that his doctors in China had prescribed, including his immunosuppressants. He knew that failing to take the medication could cause graft rejection, so he made an appointment with Dr. Roberts, a nephrologist at a local academic center who specialized in care of renal transplant patients… Dr. Roberts understood how difficult it was to secure an organ, but didn’t want to be perceived as condoning Mr. Lawrence’s actions.

  • How would you frame the central ethics question in this case?
  • What are the key features of the case that would guide an ethically appropriate response from your perspective?
  • What might make this case challenging from your perspective?

 

WATCH: When thinking about justice, it is important to explore the perspectives of all stakeholders and consider the systems through which they interact. In the case of transplant tourism, this means knowing where organs can come from as well as who seeks them out. This is a problem of global justice, which means that ALL governments and ALL healthcare systems are implicated in our ethical reasoning.  See this short video from BBC News that portrays one family’s experience.

As you watch CONSIDER:

  1. How might information about the international organ trade affect your perspective on this case? Would it change your mind about what to do as Mr. Lawrence’s physician if you knew that Mr. Lawrence’s organ was donated by a family member in China, a person experiencing poverty like the family in the above video, or someone who was incarcerated and did not consent?
  2. How does this video and the above case affect your vision of collective efforts towards social justice?

WATCH: Now that you’ve thought about the case on your own, see the perspectives of some experts from different professional backgrounds.

https://mediasite.hs.washington.edu/Mediasite/Play/4cb3214702c1459d90e52d85e4187b491d

As you watch CONSIDER:

  1. While the professional and experiential backgrounds of these experts are diverse, they do not represent all the relevant stakeholders in this case. Who else would you want to hear from?
  2. Cases like these can bring up a lot of implicit bias, can you identify some of your own? What about some of the experts in the reading and the video?
  3. What are some of the key ethical resolutions or points that really stuck out to you in this case?

 

READ: in preparation for the discussion of a different case where injustice appears at the bedside, review this OpEd by Dr. Ofri “The Insulin Wars”. This essay provides a robust perspective regarding what it can feel like to face societal injustices that obstruct one’s ability to provide optimal care.

 


For further reading (not required)…

There are several impressive documentaries on transplant tourism, here is one from the UK that is slightly older (2004) but provides extensive insight into the perspectives of various stakeholders including patients, families, and transplant surgeons on multiple sides of the debate: The Transplant Trade. There is another newer documentary that investigates China’s illegal organ trade called Human Harvest, which can be accessed through the library here.

There are a number of recent articles in the news regarding the insulin cost crisis in the US. See this OpEd by Maris Kreizman “Why Am I Stockpiling Insulin in my Fridge?” Or, watch this video: https://nyti.ms/2RcVv5u.

 

What is Bioethics: Rules and Consequences

We all face ethical questions, uncertainties and conflicts. Sometimes they are mundane, everyday sorts of inquiries (should I keep a promise to meet a friend on time?), others are much bigger, character affirming and even life altering (should I withdraw life sustaining treatment for this patient?).

Bioethics, specifically medical ethics, helps us to reason through some of the difficult ethical questions that arise in medicine.

WATCH this video of Dr. Maggie Little offering an introductory look at bioethics. It will provide the necessary groundwork for thinking about the meaning of ethics in medicine as we start to look at both paradigm historical cases and contemporary cases.

 

Then READ this article to see what Bioethics means to clinicians at the bedside:

Berwick, Donald. (2017) “Moral Choices for Today’s Physician”, JAMA 318(21):2081-2082.

As you read this article, CONSIDER:

  • How are moral choices different from other choices (e.g. choosing what to eat for dinner or what to wear to class)?
  • How might moral choices be particularly important to you in your role as a physician?

 

Then READ: Stonington SD. Whose Autonomy? JAMA. 2014;312(11):1099-1100. 

As you read CONSIDER… Autonomy is a complicated concept. While in the US it is often understood as the capacity of an individual to make independent choices, this isn’t the reality of choice and this article helps us to see why. Our choices are always enmeshed in complicated interpersonal (e.g. family) and structural (e.g. cultural norms) social relations. 

 

POST-SESSION REVIEW — here are some of the Key Ethics Concepts that arise in the above material:

You can find more Key Ethics Concepts on the Ethics Resources Page

 


If you’re looking for more, you can find physicians’ stories of ethics at the bedside in a number of journals and books, here are a couple of samples (COMPLETELY OPTIONAL) …

Complexities in Decision-Making Capacity

REVIEW THESE KEY ETHICS TERMS:

READ this seminal article by Paul Applebaum on the criteria for assessing a patient’s capacity to make medical decisions: Applebaum, Paul S. (2007). “Assessment of Patients’ Competence to Consent to Treatment”, The New England Journal of Medicine, 357(18): 1834-1840.

Keep in mind Applebaum’s 4 Criteria because they are frequently used today as the standard for assessing decisional capacity and assessing for capacity to consent to treatment. :

CRITERIA FOR ASSESSING DECISION-MAKING CAPACITY
  1. Communicate a Choice
  2. Understand the Relevant Information
  3. Appreciate the Situation and its Consequences
  4. Reason About Treatment Options

REVIEW THESE TWO CASES:

CASE 1

A 64-year-old woman with MS is hospitalized. The team feels she may need to be placed on a feeding tube soon to assure adequate nourishment. They ask the patient about this in the morning and she agrees. However, in the evening (before the tube has been placed), the patient becomes disoriented and seems confused about her decision to have the feeding tube placed. She tells the team she doesn’t want it in. They revisit the question in the morning, when the patient is again lucid. Unable to recall her state of mind from the previous evening, the patient again agrees to the procedure.

Is this patient competent to decide? Which preference should be honored?

CASE 2

A 55-year-old man has a 3-month history of chest pain and fainting spells. You feel his symptoms merit cardiac catheterization. You explain the risks and potential benefits to him, and include your assessment of his likely prognosis without the intervention. He is able to demonstrate that he understands all of this, but refuses the intervention.

Can he do that, legally? Should you leave it at that?

 

**Cases taken from: http://depts.washington.edu/bioethx/topics/consent.html

 


For further investigation (not required):

Epistemic Injustice and Sickle Cell Disease

This ethics session is part of a multidisciplinary session on sickle cell disease. For the ethics portion, begin by listening to this podcast:

https://www.npr.org/2016/02/16/466942135/remembering-anarcha-lucy-and-betsey-the-mothers-of-modern-gynecology 

It is a short podcast but addresses some of the issues of racism and injustice in the clinical context that concern us here. The podcast focuses on Dr. Judd’s poem “In 2006 I Had an Ordeal with Medicine”, which comes from her collection patient. This poem, and the collection overall, articulates her own unjust experience with medicine and helps us to see and feel its connection to a history of like experiences of injustice. We can only summarize here and you can find a bit more on the podcast linked to above, but Judd experienced prolonged suffering with multiple providers as her ovarian torsion was continuously misdiagnosed (as menstrual cramps, as pregnancy, as a bladder infection). She was continuously not believed, not heard, and not treated appropriately, and so disrespected and dehumanized, all the while experiencing significant pain.  This poem (and the collection more fully) interweaves this experience with the advent of gynecology in which enslaved African-American women were experimented on by Dr. Marion Sims (the so-called “father of modern gynecology”). At least three of the women Dr. Sims’ experimented on (Anarcha Wescott, Betsey Harris and Lucy Zimmerman) went through multiple procedures without anesthesia despite it recently being available. We highly recommend (though it is not required) an article in the New York Times, which reveals some of the historic details of these experiments and the forms of torture experienced by the women under Dr. Sims’ supposed care (including the fact that “Sims’ records show that he operated on Anarcha 30 times”).

While we might hope that the experiences of Anarcha, Betsey, and Lucy among so many other African-Americans were not so deeply tied to the experiences of persons of color in contemporary society, Dr. Judd’s experience and work, and this session on sickle cell prove otherwise. We will discuss how palpable and dangerous continued racial bias can be. This bias manifests in health disparities in the multifold ways, only some of which will we be able to address in this session. Black and brown children, teenagers and adults continue to face health disparities even when other social factors are controlled for (e.g. education and income). As Judd says, these ghosts haunt. And it is for this reason among others that we ought remember, honor, understand, and discuss.

Now let’s do some ethics! After listening to the podcast, read this snippet from Miranda Fricker’s Epistemic Injustice (click here)…

Epistemic injustice takes a number of forms.

One example in the healthcare setting is skepticism regarding the testimony of a patient (e.g. because they are overweight or because they use drugs). This can happen in the other direction as well, a healthcare provider may face skepticism from a patient (e.g. because of their race or gender). These are forms of epistemic injustice because one person is unjustly treated as not knowing because of some form of bias.

A second form of epistemic injustice revolves around divulging information. In other words, providers might not give a patient certain information or the patient might not disclose information to providers if the other is not deemed (typically unconsciously) as deserving or capable of knowing. For instance, a provider might focus on telling an overweight patient to lose weight when they could/should also be discussing something like physical therapy (optional: for more on this read: http://www.ijfab.org/blog/2017/11/what-you-dont-know-can-hurt-you-epistemic-injustice-and-conceptually-impoverished-health-promotion/).

Fricker’s conceptualization of epistemic injustice offers one theoretical perspective that is helpful for articulating some of the injustice that occurs in the context of sickle cell disease. This terminology is helpful to both understand some of the injustice that occurs and, more importantly, find the best course of responding to that injustice.

Consider the application of the term epistemic injustice in the following case…

TA (at 20yo) is admitted to the ER for the fifth time this year. He complains of intense pain, which he attributes to an intensive finals week followed by celebrating with friends. He is started on a morphine PCA, which seems to temper the pain for a couple of days, but then on day 3 he requests an increase in his pain meds. He doesn’t think the allotted morphine is doing enough. However, his inpatient team is reluctant to increase the dose of IV morphine, which is already quite high. His current dose could be easily converted to an oral narcotic and managed in the outpatient setting. The inpatient team holds a care meeting with TA and explain their rationale for recommending discharge. They think he should go home on the oral narcotic, where he will be more comfortable and his pain will be more easily controlled through both medical and non-medical means. They council TA that it would be better for him to return home given the benefits of being at home. But TA says that he is not ready for discharge.

Using the Ethics Case Analysis Tool, respond the following questions about this case:

  1. Fill out the 4-Boxes just based on this small snippet (there isn’t a lot of information here, so there will not be a lot in each box, that’s ok).
  2. Name the interactions (or lack thereof) that might reflect a form of epistemic injustice. (e.g. the team may not have demonstrated concern for TA’s pain when he requested an increase in his pain med dosage). 
  3. Name one or more ethical principles or virtues that you think would be important to manifest in our response to TA. (e.g. empathy for TA’s experience of pain)

No matter what we can accomplish in this short session, it is not possible to do justice to the narratives we have considered here and the history we have glimpsed. We hope that the reading and reflecting on the podcast encourages us all to continue to delve deeply into the historical narratives and current lived experiences as you move forward with your education and practice.

Key Ethics Term: Interdependency

The concept of interdependency is most prevalent in care ethics, feminist ethics, virtue ethics, and communitarianism. The idea is that we are not independent but rather interdependent beings in the world. We depend on others when we are young/old, sick, etc., but also in our everyday lives. We would not get along without schools, daycares, public transportation, electricity, and so on. In care ethics and virtue ethics, this is not a feature of humans that is to be overcome, but actually something valuable about our lives. It is not just that we need relationships to survive, but they are also important to meaning and flourishing in the world.

This feature of our humanity can be easy to forget in the clinical setting where patients and clinicians seem removed from the particular relationships that make them who they are and able to live in the world as they do. Sometimes it can make all the difference to recognize both the interdependency of the clinician-patient relationship, but also the other interdependent relationships that can support or impede care. Beginning from a perspective of interdependency might have a more positive effect than thinking in terms of individual independence and rights.


Key Ethics Concept: Communitarianism

The communitarian approach on the values of the community over and above the values of individuals within that community. This approach looks to the particular context, community beliefs, and societal relations to formulate standards of justice and responsibility.

This approach can significantly affect how we make and respect decisions in clinical contexts. Some medical communities may decide not to offer particular therapies to individuals based on the needs of the community. Likewise, some families may decide not to accept particular interventions in light of their community’s resources and values. See the case of Baby Aaron below for a good example of a communitarian ethos.


Ethical Values, Obligations and Virtues in Communities

REVIEW these key ethics terms:

WATCH this video of Carol Gilligan on Moral Development and Care Ethics:

While watching, CONSIDER …

  • What is different about the approach that Gilligan is suggesting (i.e. a relational or Care Ethics based approach) from what you typically think of in terms of your ethical obligations as physicians.

READ Baby Aaron and the Elders by Ellen Wright Clayton and Eric Kodish
.

While reading CONSIDER:

  • How is a communitarian approach being employed by Aaron’s family?
  • How could a communitarian approach guide the response of the medical provider?
  • What would be the primary goal(s) in a Care Ethics based approach to this case? Be specific.
  • How might a Care Ethics approach guide your particular response to baby Aaron’s family? What would it avoid?

Key Ethics Concept: Care Ethics

Care ethics began as a feminist perspective on ethics. Some of its founders (e.g. Carol Gilligan, Nel Noddings and Virginia Held) stressed that traditional ethics neglected roles and values that were stereotypically attributed to women, such as care and empathy.

Care ethics begins from a different metaphysical stance on identity. It conceptualizes humans as fundamentally relational, interdependent, and emotional.

The ethical approach starts from this position of relationality and focuses on the value of creating and sustaining caring relations. Care ethicists sometimes disagree about what this means, but overall the stance is different from other theories insofar as it places our relationships with others as the primary focus of ethical analysis. So, rather than ask ourselves “what are my ethical obligations?” or “what are my ethical duties and rights?”, we instead ask “how can I cultivate caring relationships?”.

In the clinical setting, this approach can change our actions insofar as it asks us to think about our particular relationships first. Think about the case of a “difficult clinician-patient encounter”. Care ethics would ask us to think about how to repair the relationship first and then move towards figuring out the best treatment options. Likewise, in the case of a non-adherent patient, care ethics would ask us to think about what relationships are obstructing adherence and how they might be appropriately changed to best instantiate care.