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General interest items edited by Janice Flahiff

[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

[Reblog] Measuring Quality of Care for Older Adults With Serious Illness

From he 22 January 2014 post at HealthAffairsBlog

by Laura Hanson, Anna Schenck, and Helen Burstin

Editor’s Note: This post is the third in a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series features essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value. 

In the United States, value is the new health care imperative – improving quality while controlling costs.  We spend nearly twice the rate of comparable nations, yet have poorer health outcomes.  In 2010, President Obama signed the Patient Protection and Affordable Care Act (ACA), mandating a new emphasis on paying for value, not volume.

Our greatest opportunity to enhance value in US health care is to improve quality of care for older adults with serious illness – the group who uses the most health care services. Serious illness, in which patients are unlikely to recover, stabilize, or be cured, is life-altering for patients and family caregivers.  It includes advanced, symptomatic stages of diseases such as congestive heart failure, chronic lung disease, cancer, kidney failure, and dementia. Serious illness may also refer to the cumulative consequences of multiple conditions progressing over time, causing functional decline or frailty.

We’ve made important progress in understanding high quality care for this population of patients.  Researchers have asked patients with serious illness and their families how they define high quality care.  Especially in serious illness, patients want control over treatment through shared decision-making.   Even when there is no cure, most patients still want health care that helps them live longer – but only if they can also get help with function, physical comfort, and attention to family, emotional and spiritual needs.

We know what types of health care help patients and families cope with serious illness.  A 2012 report to the Agency for Healthcare Research and Quality finds evidence for three types of care to improve health outcomes:

  1. Expert pain and symptom treatment
  2. Communication to engage patient preferences for treatment decisions
  3. Interdisciplinary palliative care

We’ve developed quality measures to understand how often real-world care lives up to these ideals.

……

 

Read the entire article here

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January 26, 2014 Posted by | health care | , , , , , | Leave a comment

Stateline – New York enacts pioneering law linking all seriously ill patients to palliative care.

Stateline – New York enacts pioneering law linking all seriously ill patients to palliative care..

From the 4 March 2013 article

NEW YORK – The palliative care team at Mount Sinai Hospital gathers on a Thursday morning to exchange the latest information on the patients in their ward. It is a raw, unforgiving day outside, but the weather, the news, most everything beyond these walls are concerns that patients on this ward do not have the luxury to worry about. Theirs is a shrunken world measured in degrees of pain, blood pressure, heart rate, and a set of poor options – none of which any healthy person would welcome.

The simplest definition for palliative care is that it is treatment designed to reduce the pain, discomfort and stress associated with a serious disease. But it also entails eliciting from patients and families in dire circumstances their priorities and wishes to make sure the treatment conforms to those desires.

New York State felt so strongly about the importance of palliative care that last year it enacted pioneering legislation to make certain all those with advanced illnesses had access to this sort of treatment. Now other states are considering following New York’s lead.

Around the oval conference table sit two palliative care doctors, three palliative care nurses, a social worker, an art therapist and a chaplain, who, in this case, is a rabbi. Other nurses enter the room one-by-one to give updates on the patients they are tending to.

The unit is much quieter than most acute-care wards, with far less clattering and beeping medical machinery in order to keep the unit as serene as possible. Occupying one of the 13 beds in the unit today is a 28-year old Brooklyn man with liver failure. Death is imminent, one of the doctors, Stephen Berns, says. Days if not hours. Although the man’s pain can be addressed, his elderly grandparents worry that he will die before their parish priest arrives to perform a baptism. The rabbi, Edie Meyerson, tells the group that she has researched the issue and learned that any Christian can perform a baptism, if it should come to that.

A few doors down lies a 77-year old woman, a one-time deputy superintendent in the state’s corrections system. Her breast cancer has metastasized throughout her body and now all her organs are blinking off. Her closest relatives — two cousins and a niece, the latter her health proxy, have asked that she be removed from the ventilator that appears to be all that is keeping her alive. “We know this is not what she would want,” her cousin says later that day. “She would not want to be on all these machines.”

Then there is a 48-year old man from Puerto Rico with an inoperable tumor in his throat. His face is swollen to such an extent that he can’t open his eyes and his lips have ballooned into protuberances. He has found that even with painkillers, the only tolerable position is to sit cross-legged on his bed, leaning forward with his head cushioned on a pile of pillows. The team wants to start him on steroids to reduce the swelling, but the patient is already hinting that he has had enough.

Advanced Life Limiting Conditions

Not Enough Doctors
  • One palliative care doctor for every 1,300 patients with a serious illness in the U.S.
  • One oncologist for every 145 patients with a new cancer diagnosis
  • One cardiologist for every 71 heart attack victims
  • The American Academy of Hospice and Palliative Medicine Workforce Task Force estimates that there is shortage of as many as 18,000 palliative care doctors in the U.S.
Source: Center to Advance Palliative Care.

The cast of characters on the ward today is not atypical. Statistically, most patients on the ward will die here; a minority will improve enough to enable them to depart, usually to their homes, a nursing home or other health care facility. For all of them, the goal of the staff is to provide care that best accords with their wishes, whether that be an end to life-prolonging efforts, relief from the symptoms that are afflicting them, or some combination of the two.

The New York law passed last year ensures that everyone in the state with “advanced life limiting conditions or illnesses who might benefit from palliative care” not only be informed of these services by their healthcare provider but that the provider facilitate access to that care if they desire it. Violations are subject to fines of up to $10,000 and a prison term of up to a year. (According to the state health department, no one has yet been charged or prosecuted under the law.)

“That was a major step,” says Amber Jones, a consultant on palliative care in New York. “It shone a light on the need patients and families have for information.”

This year, legislatures in several other states are considering their own palliative care legislation at least partly modeled after the New York law. Those states include Rhode Island, New Hampshire, Connecticut, Vermont, Massachusetts, Arkansas and Michigan.

Even as legislation advances, there remains widespread confusion about what palliative care is. “There is a misunderstanding among the public that palliative care means end of life care,” says Jay Horton, director of the Palliative Care Consult Service at the Lilian and Benjamin Hertzberg Palliative Care Institute at Mount Sinai. “Many clinicians have the same view.” But the view is not accurate.

Palliative care provides an added layer of support for seriously ill persons and their families.  It is delivered alongside all other disease treatments, in an effort to ease the suffering caused by both the disease and its treatment. Palliative care is always part of the treatment for someone in hospice care, that is, someone with a short prognosis who wants to forego further disease intervention.

But palliative care is also appropriate for many others with serious or chronic illnesses, such as leukemia, lymphoma (which is cured in a significant number of patients), heart failure, emphysema, renal failure, and dementia (with which people can live for years.)  One common misconception about palliative care is that it is mutually exclusive with treatment for the underlying disease, that it only comes into play when all hope of cure is gone. That is not the case. “Just because you are undergoing palliative care doesn’t mean you are giving up on other treatment,” Horton says.

Discussing Options

Practitioners are quick to point out that palliative care, as it is practiced today, entails far more than the relieving of symptoms….

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March 22, 2013 Posted by | Consumer Health | | 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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