Tag: substituted judgment

Bioethics Blogs

End-of-Life Healthcare Sessions at ASBH 2017

The 2017 ASBH
conference
 in October 2017 includes over 400 workshops, panels, and
papers in bioethics and the health humanities.  Here are ones that pertain
to end-of-life issues.


THURSDAY, OCTOBER 19


THU 1:30 pm:  End-of-Life Care and Decision-Making in the ICU – Limited
English Proficiency as a Predictor of Disparities (Amelia Barwise)


Importance: Navigating choices in predominantly English-speaking care settings
can present practical and ethical challenges for patients with limited English
proficiency (LEP). Decision-making in the ICU is especially difficult and may
be associated with disparities in health care utilization and outcomes in critical
care. 


Objective: To determine if code status, advance directives, decisions to limit
life support, and end-of-life decision-making were different for ICU patients
with LEP compared to English-proficient patients. 


Methods: Retrospective cohort study of adult ICU patients from
5/31/2011-6/1/2014. 779 (2.8%) of our cohort of 27,523 had LEP. 


Results: When adjusted for severity of illness, age, sex, education, and
insurance status, patients with LEP were less likely to change their code
status from full code to do not resuscitate (DNR) during ICU admission (OR,
0.62; 95% CI, 0.46-0.82; p


Conclusion: Patients with LEP had significant differences and disparities in
end-of-life decision-making. Interventions to facilitate informed
decision-making for those with LEP is a crucial component of care for this
group.


THU 1:30 pm:  “But She’ll Die if You Don’t!”: Understanding and
Communicating Risks at the End of Life (Janet Malek)


Clinicians sometimes decline to offer interventions even if their refusal will
result in an earlier death for their patients. For example, a nephrologist may
decide against initiating hemodialysis despite a patient’s rising creatinine
levels if death is expected within weeks even with dialysis.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

More about Charlie Gard

Dr. Robert Truog, the bioethicist and transplant physician who has pushed the envelope on the definition of death, has weighed in on the Charlie Gard case in a “Perspectives” piece that is generally available (i.e., without a subscription) from the Journal of the American Medical Association (JAMA).   By all means read it.

Dr. Truog approaches the case from the standpoint of limiting medical research—indeed, that’s in the title of his article.  He says the case is about “the best interest of the patient, financial interest, and scientific validity.”  On the first point, he is cautious about the British courts’ assertions that it can assess how much pain and suffering Charlie is experiencing, and whether the courts know this better than the baby’s patients.  This caution seems wise.  As I have reflected further on this case it strikes me that I may be missing a legal distinction between Britain and the US; frankly, I am not well-versed on British law in these cases.  I do tend to think of the Gard case in terms of substituted decision-making in the case of severe or terminal illness.  My thought process runs through the checkpoints.  First, the patient’s wishes are paramount.  In this case, the patient cannot express wishes and may not be able to form them.  In that case, second, a surrogate decision-maker should speak for the patient using “substituted judgment” or “substituted perspective” to express how the patient might have approached the case if able to express wishes.  Here, the parents are available to speak for the patient. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

DC Court Allows Guardian to Withdraw Life Support WITHOUT Evidence of Patient Wishes

D.C. Superior Court Judge Russell Canan

The Superior Court of the District of Columbia has issued an innovative order in an end-of-life treatment conflict.


In June 2014, YP suffered cardiac arrest following a drug overdose.  Clinicians later determined that YP’s brain injury was profound and severe.  YP’s daughter and guardian wanted to withdraw life support.  But YP’s siblings from Panama objected.  


The court ruled in favor of the guardian.  This order is interesting, because DC statutes provide that a guardian “shall not have” the power to consent to stopping life-sustaining treatment “unless it appears the incapacitated person would have consented.”  


As the court observes, this statute seems to mandate a substituted judgment standard.  If there is zero evidence the the patient’s wishes (as in this case), then it seems that a guardian may not consent  to stopping life-sustaining treatment.


The court found this result absurd and instead elected to follow the majority of jurisdictions that permit use of an objective best interest standard when there is insufficient evidence for a decision maker to exercise substituted judgment.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

BioethicsTV: Substituted Judgment

by Craig Klugman, Ph.D.

On Grey’s Anatomy (Season 13, Episode 14) two cases lead to questions about who makes decisions for patients. In the first story, a young woman wanders into the ED disoriented and talking about snakes in a hat to denote to the viewer that she has a mental illness and lacks capacity. She is filthy, homeless, and lacks identification. The woman collapses because her very old pacemaker malfunctions. Two cardiologists in the room agree that she needs the surgery and this is all that the viewer sees of consent.…

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

SFEOL – Now Care Planning – Peaceful and Timely Transitions for Patients Who Lack Effective Living Wills

Join me at the next meeting of the San Francisco Bay Area Network for End of Life Care on January 4, 2017, at 11:30 am, at Vintage Golden Gate Fine Arts Hall, 1601 19th Ave, San Francisco, CA 94122.


The topic:  “Now Care Planning – Peaceful and Timely Transitions for Patients Who Lack Effective Living Wills”  


Dr. Stanley Terman will introduce “Now Care Planning”—if the patient’s loved ones are sure that, if the patient could observe her present life and knew her prognosis, she would refuse all life-sustaining treatments—but the patient has either no living will or one that is ineffective. 


This new protocol starts with several people contributing their Substituted Judgment to make treatment decisions on the patient’s behalf. Then they present the treating physician their Consensus of Substituted Judgment. If necessary, they invoke strategies to motivate the physician to honor the patient’s wishes.

“Now Care Planning” strives to attain three goals:
To make the same treatment decision that the patient would have made for his or her current condition, free of self-serving and biased influences.
To reduce the current and future emotional stress of each surrogate decision-maker from making difficult, existential treatment decisions for loved ones.
To motivate treating physicians to honor patient’s end-of-life wishes.

Dr. Terman will explain why Healthcare Professionals might consider training to learn how to counsel patients on “Strategic Advance Care Planning” and “Now Care Planning.” Dr. Terman feels that trained professionals should be adequately compensated for their additional knowledge, experience, and skills. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Means to an End December 16, 2016 According to a recent survey of nearly 8,000 Americans, ov…

December 16, 2016

by Sean Philpott-Jones, Chair, Bioethics Program of Clarkson University & Icahn School of Medicine at Mount Sinai

Means to an End

My mother passed away last Wednesday. She was found unresponsive on the floor of her kitchen early Tuesday, in severe septic shock from untreated peritonitis and a perforated intestine. Although she was admitted to the intensive care unit and given aggressive medical treatment, she never regained consciousness. Because of her age and her poor health – exacerbated by the fact that she had ignored the signs and symptoms of sepsis for nearly a month – her body was simply not strong enough to fight the infection. Less than thirty-six hours after she was admitted to the hospital, we let her peacefully and painlessly slip away.

I’m telling you this story not to garner sympathy, but rather to share with you a lesson that I learned. Because my mother was unmarried and because she was unable to consent for treatment, according to the laws of the state in which she lived I was the de facto decision maker about her medical care. This is quite common. Unless otherwise indicated, family members – usually the spouse, adult children, adult siblings and parents, in that order – are assumed to be the surrogate decision makers for a patient who cannot provide consent.

The decisions that I had to make, most of which were made at 2:30 in the morning after chatting briefly with the clinical care team, included the decision to make my mother DNR (‘do not resuscitate’) after her heart stopped for the third time.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Overcoming The Challenges In Advance Care Planning For Dementia Patients

Many newly diagnosed dementia patients
may have capacity and be fully able to state their preferences about future
medical care when they lose capacity. Their decisions about risks and benefits
of medical treatments while they have capacity flow from their critical interests which are the kinds of interests, which if not
satisfied, would make them think they were worse off in some way or that their
life had not be worthwhile. When a patient is capable of articulating his or
her critical interests we know what is most important about them in terms of
making their lives meaningful. So it would seem that preferences that stem from
critical interests about future medical care provides the most definitive
evidence possible, i.e. substituted judgment, for both medical and family caregivers to have as a basis on
which to be reasonably sure they are making decisions that the incapacitated
patient herself would make if she were in this same situation.

However, many incapacitated dementia
patients who by definition are no longer able to express their critical
interests are indeed still able to express preferences based in their experiential interestsExperiential interests are abiding
biologically based, immediate interests grounded in the quality of one’s life
from activities in which they are finding satisfaction, pleasure, and amusementThe
situation becomes particularly challenging when it appears that the
incapacitated dementia patient is expressing a preference based on experiential
interests that runs contrary to a prior expressed preference stemming from
critical interests.

Because patients with severe dementia
experience their lives in discrete moments, each expressing its own set of
experiential interests, there is also a concern about how to understand the
changing self of the patient and interpret her wishes and preferences
throughout the transitions, particularly at the end of life.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Strategies for Medical Decision Making for Unrepresented Incapacitated Patients

Felicia Cohn, Leah Eisenberg, and Joan Henricksen delivered a great panel presentation at ICCCEC.  This is not a summary but just a list of eight observations.

1.  It is not sufficient to have the mechanism make specific treatment decisions as they arise.  The patient needs a plan.

2.  Most decisions are “easy.”  On the one hand some interventions are low-risk, high reward, like setting a broken leg.   Others are very high burden, low benefit.

3.  The Mayo Clinic tries to get a court appointed guardian from both the hospital’s county and the patient’s home county.  But they have had ZERO SUCCESS over the past four years.  The system explains the patient is safe in the hospital, the guardian would just follow the treatment team anyway, and it is too expensive.

4.  In Orange County, getting a public guardian can take 6 months and is often denied in any case.

5.  Kaiser has few unrepresented patients, because its patients are “members” of the system.

6.  There is a strong bias in favor of blood relatives, even when they are clearly inappropriate surrogates, even when the law recognizes other surrogates.  Sometimes, hospitals even “badger” relatives into serving as a surrogate when they barely know or care about the patient.

7.  A crisp example of a reason not to permit the attending herself to make the decision is the physician’s own religion.

8.  The patient’s bar drinking buddy may not know enough about the patient to exercise substituted judgment, but that does not mean a pure objective best interest approach is right.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Defining Death: The Case for Choice

Distinguished bioethicists Robert M. Veatch and Lainie F. Ross have adapted the first several chapters of their fabulous Transplantation Ethics to be a separate volume from Georgetown University Press: Defining Death: The Case for Choice.

“New technologies and medical treatments have complicated questions such as how to determine the moment when someone has died. The result is a failure to establish consensus on the definition of death and the criteria by which the moment of death is determined. This creates confusion and disagreement not only among medical, legal, and insurance professionals but also within families faced with difficult decisions concerning their loved ones.”

Veatch and Ross argue that the definition of death is not a scientific question but a social one rooted in religious, philosophical, or social beliefs. Drawing on history and recent court cases, the authors detail three potential definitions of death–the whole-brain concept; the circulatory, or somatic, concept; and the higher-brain concept. Because no one definition of death commands majority support, it creates a major public policy problem. The authors cede that society needs a default definition to proceed in certain cases, like those involving organ transplantation. But they also argue the decision-making process must give individuals the space to choose among plausible definitions of death according to personal beliefs.

1. Defining Death: An Introduction
The Emergence of the Controversy
Three Groups of Definitions
The Emergence of a Uniform Brain-oriented Definition
Irreversible vs. Permanent Loss of Function
Defining Death and Transplanting Organs
The Structure of the Book

2. The Dead Donor Rule and the Concept of Death
The Dead Donor Rule
Candidates for a Concept of “Death”
The Public Policy Question

3.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Truth Telling In Medicine: Problems Old and New

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.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.