Mastodon Chronic pain series in NYT; National Family Caregivers Month; "Disadvantaged dying;" Competence/decision-making for those with mental illnesses ~ Pallimed

Tuesday, November 13, 2007

Chronic pain series in NYT; National Family Caregivers Month; "Disadvantaged dying;" Competence/decision-making for those with mental illnesses

Health columnist Jane Brody is on Part 2 (Chronic Pain: A Burden Often Shared) of a 3-part series on chronic pain in the New York Times. Part 1 (Living With Pain That Just Won't Go Away) was in last week's Health Section (Tuesdays). NYT articles online are now free.

From the NFCM 2007 page of the National Family Caregivers Association:

Every November the President of the United States proclaims November to be National Family Caregivers Month (NFC Month). It is designated as a time every year to thank, support, educate and celebrate more than 50 million family caregivers across the country currently providing an estimated $306 billion in "free" caregiving services. Speak Up For Your Rights This year NFC Month will focus on family caregivers speaking up for their rights. This is an opportunity to advocate for stronger public policy addressing family caregiving issues and raise awareness about community programs supporting family caregivers. This is also a time to focus on encouraging family caregivers to always... Believe in Yourself . . . Protect Your Health . . . Reach Out for Help . . . Speak Up for Your Rights.

It is not surprising, but worth noting, that some of Brody's advice to caregivers of those with chronic pain is very similar.

"Disadvantaged dying" is a term I lifted from an interesting commentary in the International Journal of Palliative Nursing on palliative care for those with intellectual disabilities. I think this dovetails nicely with some of the recent discussion of competence, including competence in those with psychiatric disabilities [See also the following item]. The authors describe a nascent model program in a community in the UK that focuses hospice and primary care services on patients with intellectual disabilities and their carers. One of the authors is a nurse with a long-time interest in the care of people with intellectual disabilities. The other two are nurses in hospice and primary care, respectively. They point out that this population is living longer than in the past, and therefore subject to the same chronic illnesses of aging as the rest of us. They also imply that their carers are also more likely to die before they do--in hospice or otherwise--and so need information and support tailored to their needs. Very little research has been done on end-of-life issues with this population. There are serious practical and ethical questions, in addition to the general invisibility of this group. The authors describe a systematic and collaborative approach (what a concept) to developing and implementing services in the community and education initiatives for hospice, primary care, and disability professionals, as well as carers and the clients themselves. They point out that having an intellectual disability doesn't mean you won't have preferences or can't make some choices.

Unfortunately, this journal is difficult to access. Not many people or libraries in this country subscribe to it and it is not indexed in PubMed. This particular issue, from Sep 2007, is not yet indexed in CINAHL, and the publisher does not make articles available online.

Also, check out this new EPERC Fast Fact & Concept (co-written by Drew): #192: Palliative Care for Adults with Developmental Disabilities.

Competence/decision-making for those with mental illnesses
Some of you may have missed this link in a comment from a reader: Competence Issues in Self-Directed Care. This is an article on self-care and decision-making for people with mental illness. It is on the Substance Abuse and Mental Health Services Adminstration's web site.

Advance directives don't apply to those with mental illness because of legal restrictions, according to a short letter to the editor by Thomas Szasz, reponding to the UK's recent law mandating that advance directives must be honored. Szasz is a psychiatrist (now well into his 80's) who has always been at odds with the psychiatric establishment for what he sees as coercive and paternalistic approaches to management. He takes a civil rights approach to "freeing" psychiatric patients from restrictive laws and "incarceration" that prevent them from making meaningful decisions in their own self interest.

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