Hospice eNews
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What the Media Said about End-of-Life Care This Week
Week of
May 16, 2005
…a
service of
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JAMA EXPLORES PALLIATIVE
CARE IN THE LAST HOURS
Using the story of Mr. R., a 74-year-old with cancer of the bile duct, JAMA explores palliative care offered during the last hours of life. Mr. R. experienced, as do many cancer patients, several months of good health after diagnosis, followed by a relatively quick decline. He was admitted to hospice about nine days before his death. The author, James Hallenbeck, MD, says that, though the case will remind many practitioners of their own dying patients, the case illustrates the issues commonly faced – “prognostication, physical changes at the end of life and related treatment, family coaching, death pronouncement, inquiries about autopsy, and postdeath follow-up.”
Hallenbeck writes that acknowledging uncertainty about the prognostication process “helps family members who wish to conduct a death vigil understand that it is difficult to know the exact timing of death.” Time estimates should be given in ranges instead of dates (e.g., days to weeks, hours to days, etc.). Doctors should emphasize that the most important prognostic sign is the trend of how the patient is doing.
In addressing symptom management, Hallenbeck notes that a survey of seriously ill patients found that freedom from pain was most important to them. Pain and dyspnea are both common in dying persons and are distressing if they are not “skillfully addressed.” “Comprehensive reviews of treatment options for symptoms observed in the last 48 hours are readily available,” Hallenbeck says, “but few standardized clinical pathways for care of the actively dying have emerged.”
In coaching a family, Hallenbeck says, “Excellent communication is required to avoid misunderstanding.” Hallenbeck notes that Mr. R.’s daughter and physician view the escalation of Mr. R.’s morphine differently. He suggests being very clear about the intent of an intervention, asking the family what their understanding of the intervention is and addressing common concerns.
Pronouncement of death may give families permission to grieve, Hallenbeck writes. Families, if present, should not be asked to leave during the process. Physicians called to pronounce a death should, before entering, inquire if the family is present in the room and learn about the circumstances of the death. The fact that the person has died should be clearly communicated and the physician should quietly wait for the family’s grief reaction. Console the family, Hallenbeck says, and respond simply to immediate questions and concerns.
If appropriate, present autopsy or organ donation as options. Identify potential benefits and identify and address concerns.
Hallenbeck concludes by saying that the core competencies involved in care of the dying patient and their families should be part of the core curriculum for all medical students. “It is an honor to care for people at the end of life,” Hallenbeck says, “helping them to write their final chapters. … Yet, there is much that clinicians can do to help dying patients and those they leave behind. In competently and compassionately providing care, we can achieve a level of job satisfaction that can be profound and sustaining.”
The article includes a list of websites for end-of-life care resources and CME credit is available for physicians. (JAMA, 2005;293:2265-2271)
USA Today and ABC News teamed up last week for an in-depth look at pain and its management. Both organizations have put most of their material from “The Fight Against Pain” on their websites, along with numerous links to other information about pain and organizations that provide resources for pain knowledge and management.
USA Today, whose web coverage is at usatoday.com/news/health/pain-series.htm, has articles on chronic pain, sports and exercise-induced pain, Paula Abdul and her story about complex regional pain syndrome, pain caused by battle wounds that would have been fatal in earlier wars, pain medicines, the science of pain, children and pain, prayer, the lower back and the increasing difficulty of getting painkillers. Links are available to chats with Dr. James Rippe on arthritis and exercise, Dr. Woodson Merrell and alternative pain remedies and Dr. Frederick Burgess with answer to questions about pain.
ABC
News website is abcnews.go.com/Health/PainManagement. Original
reports for the series examine why we push through pain, the purpose of pain,
the pharmaceutical companies’ search for blockbuster painkillers, laughter and
prayer and who feels pain and why.
Additional sections, with many reports each, deal with back pain,
migraines and other headaches, sport injuries, painkillers and treatments and
arthritis pain.
Each site
has a link to the other and, from the ABC
News website, you can order a DVD of a compilation of the reports from World News Tonight With Peter Jennings, Good
Morning
PATIENTS HAVE MORE
CHOICES AT THE END OF LIFE
You can’t avoid death, but you may be able
to negotiate the details, according to a recent Wall Street Journal article.
Spurred by medical advances like better pain and end-of-life symptom
management, doctors and hospitals are offering terminal patients much more
input into how, when and if they want to be treated.
This shift grew out of the hospice movement, the article says, but goes beyond the idea of a peaceful death to active participation in life. There’s a greater emphasis on patient mental health and a new willingness to help patients try to stay alive for significant life events. Most such efforts occur in hospital palliative care programs, now in 22% of hospitals. In many such programs, doctors will keep trying palliative options until something works, but there can be barriers to getting that kind of care in other settings. Advanced pain treatments now include antiseizure drugs, medicine for osteoporosis used for bone pain and epidurals to deliver painkillers directly to the spinal cord. Patients willing to undergo aggressive treatment to buy a little more time may find palliative-care physicians willing to order it for them.
Deciding to stop treatment is more complicated than just turning off machines. Dr. Ira Byock, director of palliative medicine at Dartmouth-Hitchcock, says he now helps patients decide between different kinds of death. For example, death from kidney failure after dialysis is stopped is usually peaceful. More aggressive treatments may buy a little time but result in a much more painful death from severe infection or an internal hemorrhage.
Whatever the terminal illness, doctors are becoming more aggressive at treating depression, even in patients whose life expectancy is measured in weeks. And there’s a new emphasis, says the article, on the spiritual and emotional health of patients. People also have more freedom in choosing where to die, the author says, and palliative-care programs push that movement. (Wall Street Journal, 5/10)
PAIN NOTES
*
* A Boston Herald editorial asks why, if
OxyContin is to be possibly banned in
* NBC’s
Your Total Health recently examined alternative treatments for chronic
pain. Dr. Scott Fishman, of the
*
* A new study of older cancer patients in nursing homes has found that many “have severe and persistent pain that is not adequately treated.” You can view the article by browsing by title at www.liebertpub.com. (Journal of Palliative Medicine, 4/2005)
* Neurostimulators,
implantable devices that deliver electrical impulses to the central nervous
system to treat chronic pain, are being considered as treatment for problems as
varied as depression, obesity, obsessive-compulsive disorder and migraine
headaches. Joseph Nielsen, of Luck,
END-OF-LIFE,
ADVANCE DIRECTIVES NOTES
* Beginning
July 1,
* In light of the deaths of Terri Schiavo and
Pope John Paul II, Western Pennsylvania
Hospital News asked several healthcare professionals to share their views
on helping patients and families confront ethical dilemmas at the end of life. Respondents included a hospice bereavement
counselor, chaplain, medical director, social worker and others. (
* A new
* The
* Journalist Mary Beth McCauley looks at issues beyond the right to die. McCauley says that some fear dying too late, others fear dying too soon and still others fear being a burden. Of being a burden, McCauley writes, “But few who have gone the distance with serious illness would say that the experience didn’t open them to a quality of relationship they never knew existed. Few haven’t found themselves changed on the most basic level by the process, haven’t become different - a better person, if you will – than they’d thought possible previously. And who, exactly, is the ‘giver’ in such situations anyhow? Don’t those who do the burdening themselves serve by allowing another the opportunity to give?” (Christian Science Monitor, 5/11)
OTHER NOTES
*
* By
2009,
* In
March, the