An experiment in end-of-life care: Tapping AI’s cold calculus to nudge the most human of conversations

Rebecca Robbins
statnews.com
Originally posted 1 July 20

Here is an excerpt:

The architects of Stanford’s system wanted to avoid distracting or confusing clinicians with a prediction that may not be accurate — which is why they decided against including the algorithm’s assessment of the odds that a patient will die in the next 12 months.

“We don’t think the probability is accurate enough, nor do we think human beings — clinicians — are able to really appropriately interpret the meaning of that number,” said Ron Li, a Stanford physician and clinical informaticist who is one of the leaders of the rollout there.

After a pilot over the course of a few months last winter, Stanford plans to introduce the tool this summer as part of normal workflow; it will be used not just by physicians like Wang, but also by occupational therapists and social workers who care for and talk with seriously ill patients with a range of medical conditions.

All those design choices and procedures build up to the most important part of the process: the actual conversation with the patient.

Stanford and Penn have trained their clinicians on how to approach these discussions using a guide developed by Ariadne Labs, the organization founded by the author-physician Atul Gawande. Among the guidance to clinicians: Ask for the patient’s permission to have the conversation. Check how well the patient understands their current state of health.

And don’t be afraid of long moments of silence.

There’s one thing that almost never gets brought up in these conversations: the fact that the discussion was prompted, at least in part, by an AI.

Researchers and clinicians say they have good reasons for not mentioning it.

”To say a computer or a math equation has predicted that you could pass away within a year would be very, very devastating and would be really tough for patients to hear,” Stanford’s Wang said.

The info is here.

Is there a right to die?

Eric Mathison
Baylor Medical College of Medicine Blog
Originally posted May 31, 2019

How people think about death is undergoing a major transformation in the United States. In the past decade, there has been a significant rise in assisted dying legalization, and more states are likely to legalize it soon.

People are adapting to a healthcare system that is adept at keeping people alive, but struggles when aggressive treatment is no longer best for the patient. Many people have concluded, after witnessing a loved one suffer through a prolonged dying process, that they don’t want that kind of death for themselves.

Public support for assisted dying is high. Gallup has tracked Americans’ support for it since 1951. The most recent survey, from 2017, found that 73% of Americans support legalization. Eighty-one percent of Democrats and 67% of Republicans support it, making this a popular policy regardless of political affiliation.

The effect has been a recent surge of states passing assisted dying legislation. New Jersey passed legislation in April, meaning seven states (plus the District of Columbia) now allow it. In addition to New Jersey, California, Colorado, Hawaii, and D.C. all passed legislation in the past three years, and seventeen states are considering legislation this year. Currently, around 20% of Americans live in states where assisted dying is legal.

The info is here.

How Do Medicalization and Rescue Fantasy Prevent Healthy Dying?

Peter T. Hetzler III and Lydia S. Dugdale
AMA Journal of Ethics
2018;20(8):E766-773.

Abstract

Before antibiotics, cardiopulmonary resuscitation (CPR), and life-sustaining technologies, humans had little choice about the timing and manner of their deaths. Today, the medicalization of death has enabled patients to delay death, prolonging their living and dying. New technology, the influence of the media, and medical professionals themselves have together transformed dying from a natural part of the human experience into a medical crisis from which a patient must be rescued, often through the aggressive extension of life or through its premature termination. In this paper, we examine problematic forms of rescue medicine and suggest the need to rethink medicalized dying within the context of medicine’s orientation to health and wholeness.

The info is here.

Ethical Dimensions of Caring Well for Dying Patients

Ilana Stol
AMA Journal of Ethics
2018;20(8):E678-682.

Dying is a uniquely individual yet deeply shared and universal experience; it profoundly impacts perceptions of culture, personhood, and identity. For many Americans, it is also an experience widely discrepant from the one they want and envision for themselves and their loved ones.  Over the past decade, there has been growing awareness of the incongruence between the way Americans say they want to die and how they actually do.  But while most would agree that this reality is not the ideal that clinicians or patients strive for, what is less agreed upon is what the roles of clinicians and patients should be in defining what actually constitutes dying and good care of dying people. What do patients and clinicians need to know about dying and care at the end of life? What barriers exist to accessing and employing this knowledge in the face of difficult decisions?

To best answer these questions, it is useful to examine the social structures and supports already in place for end-of-life care and to understand how they are being utilized. To begin with, hospital palliative care programs are expanding rapidly in order to meet the physical and emotional needs of patients with serious or terminal illness. Robust evidence now exists demonstrating that early palliative care improves the dying experience for both patients and families while generally reducing health care costs and potentially prolonging survival. Despite these facts, there is significant variation in physician practice in the care of patients at the end of life and a general consensus that palliative and hospice care are underutilized by physicians.

The information is here.

New class of drugs targets aging to help keep you healthy

Jacqueline Howard
CNN.com
Originally published September 5, 2017

Here is an excerpt:

"In the coming decades, I believe that health care will be transformed by this class of medicine and a whole set of diseases that your parents and grandparents have will be things you only see in movies or read in books, things like age-associated arthritis," said David, whose company was not involved in the new paper.

Yet he cautioned that, while many more studies may be on the horizon for senolytic drugs, some might not be successful.

"One thing that people tend to do is, they tend to overestimate things in the short run but then underestimate things in the long run, and I think that, like many fields, this suffers from that as well," David said.

"It will take a while," he said. "I think it's important to recognize that a drug discovery is among the most important of all human activities ... but it takes time, and there must be a recognition of that, and it takes patience."

The article is here.

Hospice and Access to Medications - New CMS Guidance

Center for Medicare Advocacy
Originally posted April 10, 2014

Here are some excerpts:

Summary

Medications that should be covered by the Medicare Hospice Benefit are sometimes paid for by the insurance companies that administer Medicare Part D plans.  To prevent this from happening, effective May 1, 2014, all prescribed medications for hospice patients billed to Medicare Part D will initially be denied coverage.  To get their medications, hospice patients will have to initiate and ultimately succeed at a Medicare appeal.  In other words, to protect insurance companies, dying patients will have to jump through hoops to get medically necessary, potentially life-sustaining medications.

(cut)

Conclusion

This burden-shifting to the dying patient is illogical and immoral.

CMS has erred in assuming that most hospice patients will not continue to have Part D covered medications.  Most older Americans are on medications for chronic conditions, and some of these medications...

The entire article is here.

Thanks to Deborah Derrickson Kossmann for this information.

Loyola Bioethics Study: Med Students Reflections on Caring for Dying Patients

Loyola Bioethics Online
Originally posted January 14, 2014

The imminent death of a patient is riddled with emotions for a patient and family as well as the medical team. A study based on the reflections of third-year Loyola University Chicago Stritch School of Medicine students is shedding light on the struggle physicians in training often face when trying to control their own emotions while not becoming desensitized to the needs of the dying patient and his or her family.

“Medical students are very aware they are undergoing a socialization process by which they become desensitized to the difficult things they see every day in the hospital. They realize this is necessary to control their emotions and focus on caring for the patients. On the other hand, they are very concerned about becoming insensitive to the spiritual, emotional and personal needs of the patient,” said Mark Kuczewski, PhD, leader author and director of the Loyola University Chicago Stritch School of Medicine Neiswanger Institute for Bioethics.

The entire article is here.

An interview with Mark Kuczewski, PhD by Randi Belisomo

Why Are Americans Scared to Talk About Dying?

The number of people with legal documents detailing how they want to die remains low, suggesting talk of death is still largely taboo.

By Marina Koren
The National Journal
Originally posted December 10, 2013

Imagine you're brain-dead. There was an accident, and your loved ones have gathered at your hospital bed to hear the doctors say there's not much else they can do. What would you want to happen?

It's a scenario that's as terrifying as it is unpredictable. The thought of it pushes some people to iron out end-of-life decisions long before it's too late, some when they're still healthy. They sign advance directives, legal documents, which include living wills and do-not-resuscitate orders, that outline what families and doctors can and can't do when people become patients.

In the United States, dying inside a hospital rather than at home may be more realistic than we'd care to admit. Still, many Americans tend to avoid talking about their own end-of-life wishes, according to new research published Tuesday in the American Journal of Preventive Medicine. Of 7,946 people polled in a national health survey, just 26 percent had completed an advance directive.

The entire article is here.