End-of-Life Choice, Palliative Care and Counseling

Posts Taggedend of life

Physicians’ Emotional, Institutional Barriers Prolong Medical Futility at End of Life

By Sarah Guy
August 29, 2012

The most common reasons that clinicians give to explain medically futile treatment at the end of life are emotional difficulties, such as a fear of talking about death, and institutional barriers, such as hospital departments expecting them to “do everything possible,” report German researchers.

The team suggests that improved communication training and knowledge transfer, organizational improvements, and emotional and ethical support systems could relieve the difficulty physicians have with communicating medical futility to their patients and patients’ families.

Furthermore, the fact that a large part of lifetime healthcare costs are incurred in the last year of life, and that reducing nonbeneficial treatment on intensive care units could reduce these costs, the issue of medical futility “bears considerable economic and ethical relevance to society,” say Ralf Jox, from the University of Munich, and co-workers.

The team conducted interviews with palliative care and intensive care staff involved in 17 ethics consultations at a large tertiary medical institution over a 1-year period.

The majority (62%) of the 29 healthcare professionals in the study reported knowing of situations where life-sustaining treatment (LST) was futile, and demonstrated unease at being asked to define futility to the researchers, evidenced by a 17% increase in pauses and use of filler words in their responses.

When the term was defined, staff explained medical futility as having a lack in goals of care, or that goals are overridden by associated risks, harms, and expenses – for example, an irreversible dependency on LST for the remainder of life, report the researchers in the Journal of Medical Ethics.

One intensive care physician reported that being able to say they “did everything we could” was one reason for providing futile treatment, while fear of doing something wrong (ie, legally) was another.

The authors observed differences in communication methods between physicians and families according to physician specialty. Intensive care physicians reported “a more cautious, indirect and matter-of-fact approach” (ie, explaining the difference between prolonging life and prolonging suffering), while palliative care physicians used a more direct and personal approach (ie, an “empathetic conversation” starting with what the patient already knows).

Jox et al propose an algorithm for end-of-life decision-making to assist physicians in communications about medical futility that rests on what the patient’s preferred goal of treatment is, and how the patient evaluates benefits versus risks and burdens.

“It intertwines the two principle ethical grounds of treatment decisions: patient autonomy and patient wellbeing,” they conclude.

The Next Steps: How to Start Your End-of-Life ‘Conversation’

By Dr. Shari Barnett
ABC News
August 16, 2012

You have started to think about what you would want for the end of your life, but where should you start?

Fortunately, there are several resources to which you can refer to help you start your own conversation, including those that will help you decide what questions you should ask yourself and what choices you or your family will be faced with at the end of life.

Initiate the Conversation

The Caring Conversations Workbook, published by the Center for Practical Bioethics, is a great place to start. This workbook will help you ask yourself questions that will be important for your decision-making process. It will help you explore your feelings about certain scenarios and provide you a place to start collecting your thoughts.

Another resource, produced by the American Bar Association, is its Tool kit for health care advanced planning. This collection of 10 simple tools to help you and your family have an end-of-life conversation can also help you explore, refine and voice what is important to you at the end of life.

Get Your Documents in Order

These resources can help get you started in preparing the documents you need to secure your end-of-life plans.

There are three major terms you should know when you are trying to communicate your wishes to your loved ones and your health care team.

Advanced directive: It refers to any document that gives instructions about your health care. Your advanced directive is often made up of a living will and durable power of attorney for health care.

Living Will: Your living will is the section of your advance directive that states your wishes regarding the medical treatments you would want if you were terminally ill, permanently unconscious or in the end-stage of a fatal illness.

Durable Power of Attorney of Health Care (or Health Care Proxy): Your durable power of attorney for health care is person (or proxy) who will make medical decisions for you if you can no longer make them for yourself. You should give the proxy instructions for how to make these medical decisions in your living will and also discuss these topics with all of your loved ones, but especially your proxy. Your proxy is supposed to communicate to the health care team what you would want in the event you can no longer do so.

Choices like these can be demanding on not just person who is setting up the living will but also on the family member or friend who will be called on to act as a health care proxy or agent.

Act as a Health Care Proxy or Agent

There are resources for the health care proxy or agent, as well. The American Bar Association has produced guide on how to serve as an effective advocate for a loved one.

Start the Process Online

There are many resources to help you establish an advance directive online. Mydirectives.com (mydirectives.com) can also help you establish a Web-based universal advance digital directive for free. The directive can be digitally signed, is encrypted and stored so it is available to you any time you might need it.

The American Bar Association has an online form to establish a universal durable power of attorney for health care that can be used in 45 states. The ABA has also compiled a list of resources by state.

The Caring Conversations Workbook can help you establish a durable power of attorney as well as an advanced directive.

End-of-life conversations needed, survey finds

By Michael Bamesberger
Lincoln Journal Star
July 27, 2012

It’s one of the most important conversations terminally ill patients can have with their doctors.

In the final months of life, should they pursue aggressive treatments or opt for noncurative hospice care?

According to a new study, it’s a conversation doctors aren’t having as often as Nebraskans would like.

The results of the 2011 Nebraska End-of-Life Survey, conducted by the Nebraska Hospice and Palliative Care Association, found that 70 percent of Nebraskans said they want their doctors to discuss their end-of-life care options, yet only 21 percent of Nebraskans had heard about hospice care from a doctor. More

Pastoral support, not life-prolonging care, improves QoL at end of life

By Sarah Guy
News Medical
July 18, 2012

Quality of life (QoL) at the end of life (EOL) is improved when advanced cancer patients avoid being hospitalized, when their worry is reduced, they are given pastoral as well as medical care, and when they feel they are in alliance with their physician, show results of the Coping With Cancer (CWC) study.

To date, there is no comprehensive model for the strongest predictors of QoL at EOL, says the research team, but the findings indicate that when medicine is unable to offer patients a cure, physicians may still positively and significantly influence their patients’ lives.

The challenge, remark Alan Zonderman and Michele Evans from the National Institutes of Health in Baltimore, Maryland, USA in an invited commentary, is in physicians’ and caregivers’ ability to develop and maintain effective integrated relationships with their patients that are strong enough to deliver the emotionally difficult messages relevant to prognosis, among other things. More

Making decisions for loved one’s final days

By Warren Wolfe
Star Tribune
July 19, 2012

Sue Schettle has spent the past three years coordinating an ambitious campaign to help Minnesotans make better end-of-life medical choices. As CEO of the Twin Cities Medical Society, she’s seen how often big decisions go wrong at difficult moments.

Then she found out that her sister, who almost died from complications of emphysema 18 months ago, had made a big decision of her own: She had designated Schettle to be her “health care agent” to decide on proper care in case she is unable to speak for herself.

“This is very different from talking with other people about the benefits of planning for the end of life,” said Schettle, 47, as she visited her sister, Pam Lyons. “This is real, and it’s personal.” More