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[Reblog] How the discussion on dying has changed over 40 years: A conversation with Nancy Berlinger | Association of Health Care Journalists

How the discussion on dying has changed over 40 years: A conversation with Nancy Berlinger | Association of Health Care Journalists.

From the 18 February 2015 post

If you want a refresher on how far society has come on dealing with end-of-life care issues — and what issues are still to be resolved — then this retrospective article in the Feb 12 issue of the New England Journal of Medicine from experts at The Hastings Center is a great place to begin. It reviews the history of the end-of-life care movement in the U.S., takes a look at the integration of palliative care into health care delivery, discusses the still controversial “death with dignity” laws and ethical issues like removal of feeding and hydration tubes.

I recently spoke with co-author Nancy Berlinger, Ph.D., a research scholar at Hastings, about how the conversation on death and dying has changed over four decades.

Q: Why did you and your colleagues develop this retrospective for publication in a medical journal?

NB: It stemmed from a recent revision of The Hastings Center Guidelines [for Decisions on Life-Sustaining Treatment and Care Near the End of Life].

…

We see lots of ads from hospitals advertising their standards of excellence and their programs. None of them ever advertise their end of life care.

…

it’s clear that financial incentives are very misaligned with what people need, what they want, what would be medically appropriate. This is a very complex issue – it can’t be undone by a patient, or by an individual doctor or nurse. This has to be the focus of very high-level attention.

…

Q: What should journalists be focusing on?

NB: Even if they don’t cover the deep medical end of things, they can still ask questions in the context of health and wellness, such as:

  • How much power does a sick person have?
  • How much power does a really stressed out family have?
  • How much power does a doctor, seeing X number of patients, really have?
  • And, what still do we want to try to help these people to do? To understand we’re all connected in these efforts.

    …

March 3, 2015 Posted by | health care | , | Leave a comment

Why is Hospice Still A Tough Call–Even for People Who Know?

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As Our Parents Age So Do We

When a person is approaching the end of life, we can find no easy answers, no solution that fits every person’s or family’s situation, even when they know a lot about the options available to them.

To illustrate this you will want to read For Hospice Pioneer, Still a Tough Call, by Paula Span at the New York Times New Old Age Blog. She describes the end-of-life period for Paul Brenner, age 73, who spend years organizing and leading hospice organizations around the country. Despite all of this experience, it was still challenging for Mr. Brenner and for his family to engage with hospice.

Over and over I hear from friends and acquaintances how a loved one uses hospice for the last several days or perhaps a week at the end of life, and I am sometimes puzzled about how difficult it seems to be to decide to…

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March 22, 2013 Posted by | Consumer Health, Consumer Safety, Psychology | , , | Leave a comment

Researchers Learn About End-Of-Life Communication

From the 4 June 2011 article at Medical News Today

…Lead author Robert E. Gramling, M.D., Sc.D., associate professor of Family Medicine at URMC, and colleagues with a special interest in palliative care, made several key discoveries:

  • In 93 percent of the conversations, prognosis was brought up and discussed by at least one person, with the palliative care team broaching the issue 65 percent of the time. Also, the prognosis information focused more often on quality of life rather than survival, and on the unique individual rather than the population in general. Researchers noted that prior studies support the link between open and honest discussions about prognosis to clinical benefits.
  • Both patients/families and physicians/nurses on the palliative care team tended to frame prognosis with more pessimism than optimism. This was unexpected and different than the usual patterns of communication, where talk of a serious illness tends toward avoidance or unbalanced optimism, researchers said. However, emphasizing accuracy during the palliative care consultation usually leads to treatment decisions that match patient preferences.
  • The substance and tone of the conversations varied, depending on whether the patient was present and actively participating. For example, prognosis conversations with family members alone were more pessimistic and contained more explicit information. It is possible, researchers said, this type of conversation takes place out of respect for the patient, who might be sicker in this scenario, or is someone who prefers to avoid information.
  • The closer to death, the more likely the palliative care physician was to foretell or forecast events. This might seem logical – that doctors would guide patients and families in what to expect as death approached – but in reality this vulnerable and frightening time is when families often report a void in communication. The URMC data suggests that palliative care consultations respond to this need….
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June 4, 2012 Posted by | health care, Psychology | , , , | Leave a comment

   

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