Final Rule to Update the Medicare Hospice Wage Index for FY 2010

From CMS:

The Centers for Medicare & Medicaid Services (CMS) issued a final rule to update the Medicare Hospice Wage Index for fiscal year (FY) 2010. This rule revises the phase-out of the hospice wage index budget neutrality adjustment factor (BNAF), which was finalized in the FY 2009 final rule, to now occur over 7 years. As a result of this final rule, the BNAF will be reduced by 10 percent in FY 2010, and 15 percent each year from FY 2011 through FY 2016. The combined effects of a 10% reduction to the BNAF in the FY 2010 Hospice Wage Index and a 2.1% hospital market basket update are estimated to increase payment to hospices in FY 2010 by 1.4 percent. In addition, this final requires hospice physicians to provide a short narrative as part of hospice certifications and recertifications of terminal illness.

Read more at CMS’ Hospice Center.

More on the Advance Care Planning Consultation section of the House Health Care Reform Bill

We’ve have seen more and more media coverage on Section 1233 of health care reform bill introduced in the House (H.R. 3200, America’s Affordable Health Choices Act of 2009.) We encourage people to read it for themselves. The bill does not require anyone to “come to your house” at any time for any reason and the advance care planning described is not mandatory. The “counseling” in question would most likely occur at your doctor’s office at the time of a regularly scheduled examination.

You can view a PDF of the bill here (Sec. 1233, p. 424.)

H.R.3200

America's Affordable Health Choices Act of 2009 (Introduced in House)

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SEC. 1233. ADVANCE CARE PLANNING CONSULTATION.

(a) Medicare-

(1) IN GENERAL- Section 1861 of the Social Security Act (42 U.S.C. 1395x) is amended--

(A) in subsection (s)(2)--

(i) by striking `and' at the end of subparagraph (DD);

(ii) by adding `and' at the end of subparagraph (EE); and

(iii) by adding at the end the following new subparagraph:

`(FF) advance care planning consultation (as defined in subsection (hhh)(1));'; and

(B) by adding at the end the following new subsection:

`Advance Care Planning Consultation

`(hhh)(1) Subject to paragraphs (3) and (4), the term `advance care planning consultation' means a consultation between the individual and a practitioner described in paragraph (2) regarding advance care planning, if, subject to paragraph (3), the individual involved has not had such a consultation within the last 5 years. Such consultation shall include the following:

`(A) An explanation by the practitioner of advance care planning, including key questions and considerations, important steps, and suggested people to talk to.

`(B) An explanation by the practitioner of advance directives, including living wills and durable powers of attorney, and their uses.

`(C) An explanation by the practitioner of the role and responsibilities of a health care proxy.

`(D) The provision by the practitioner of a list of national and State-specific resources to assist consumers and their families with advance care planning, including the national toll-free hotline, the advance care planning clearinghouses, and State legal service organizations (including those funded through the Older Americans Act of 1965).

`(E) An explanation by the practitioner of the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services and supports that are available under this title.

`(F)(i) Subject to clause (ii), an explanation of orders regarding life sustaining treatment or similar orders, which shall include--

`(I) the reasons why the development of such an order is beneficial to the individual and the individual's family and the reasons why such an order should be updated periodically as the health of the individual changes;

`(II) the information needed for an individual or legal surrogate to make informed decisions regarding the completion of such an order; and

`(III) the identification of resources that an individual may use to determine the requirements of the State in which such individual resides so that the treatment wishes of that individual will be carried out if the individual is unable to communicate those wishes, including requirements regarding the designation of a surrogate decisionmaker (also known as a health care proxy).

`(ii) The Secretary shall limit the requirement for explanations under clause (i) to consultations furnished in a State--

`(I) in which all legal barriers have been addressed for enabling orders for life sustaining treatment to constitute a set of medical orders respected across all care settings; and

`(II) that has in effect a program for orders for life sustaining treatment described in clause (iii).

`(iii) A program for orders for life sustaining treatment for a States described in this clause is a program that--

`(I) ensures such orders are standardized and uniquely identifiable throughout the State;

`(II) distributes or makes accessible such orders to physicians and other health professionals that (acting within the scope of the professional's authority under State law) may sign orders for life sustaining treatment;

`(III) provides training for health care professionals across the continuum of care about the goals and use of orders for life sustaining treatment; and

`(IV) is guided by a coalition of stakeholders includes representatives from emergency medical services, emergency department physicians or nurses, state long-term care association, state medical association, state surveyors, agency responsible for senior services, state department of health, state hospital association, home health association, state bar association, and state hospice association.

`(2) A practitioner described in this paragraph is--

`(A) a physician (as defined in subsection (r)(1)); and

`(B) a nurse practitioner or physician's assistant who has the authority under State law to sign orders for life sustaining treatments.

`(3)(A) An initial preventive physical examination under subsection (WW), including any related discussion during such examination, shall not be considered an advance care planning consultation for purposes of applying the 5-year limitation under paragraph (1).

`(B) An advance care planning consultation with respect to an individual may be conducted more frequently than provided under paragraph (1) if there is a significant change in the health condition of the individual, including diagnosis of a chronic, progressive, life-limiting disease, a life-threatening or terminal diagnosis or life-threatening injury, or upon admission to a skilled nursing facility, a long-term care facility (as defined by the Secretary), or a hospice program.

`(4) A consultation under this subsection may include the formulation of an order regarding life sustaining treatment or a similar order.

`(5)(A) For purposes of this section, the term `order regarding life sustaining treatment' means, with respect to an individual, an actionable medical order relating to the treatment of that individual that--

`(i) is signed and dated by a physician (as defined in subsection (r)(1)) or another health care professional (as specified by the Secretary and who is acting within the scope of the professional's authority under State law in signing such an order, including a nurse practitioner or physician assistant) and is in a form that permits it to stay with the individual and be followed by health care professionals and providers across the continuum of care;

`(ii) effectively communicates the individual's preferences regarding life sustaining treatment, including an indication of the treatment and care desired by the individual;

`(iii) is uniquely identifiable and standardized within a given locality, region, or State (as identified by the Secretary); and

`(iv) may incorporate any advance directive (as defined in section 1866(f)(3)) if executed by the individual.

`(B) The level of treatment indicated under subparagraph (A)(ii) may range from an indication for full treatment to an indication to limit some or all or specified interventions. Such indicated levels of treatment may include indications respecting, among other items--

`(i) the intensity of medical intervention if the patient is pulse less, apneic, or has serious cardiac or pulmonary problems;

`(ii) the individual's desire regarding transfer to a hospital or remaining at the current care setting;

`(iii) the use of antibiotics; and

`(iv) the use of artificially administered nutrition and hydration.'.

(2) PAYMENT- Section 1848(j)(3) of such Act (42 U.S.C. 1395w-4(j)(3)) is amended by inserting `(2)(FF),' after `(2)(EE),'.

(3) FREQUENCY LIMITATION- Section 1862(a) of such Act (42 U.S.C. 1395y(a)) is amended--

(A) in paragraph (1)--

(i) in subparagraph (N), by striking `and' at the end;

(ii) in subparagraph (O) by striking the semicolon at the end and inserting `, and'; and

(iii) by adding at the end the following new subparagraph:

`(P) in the case of advance care planning consultations (as defined in section 1861(hhh)(1)), which are performed more frequently than is covered under such section;'; and

(B) in paragraph (7), by striking `or (K)' and inserting `(K), or (P)'.

(4) EFFECTIVE DATE- The amendments made by this subsection shall apply to consultations furnished on or after January 1, 2011.

(b) Expansion of Physician Quality Reporting Initiative for End of Life Care-

(1) Physician'S QUALITY REPORTING INITIATIVE- Section 1848(k)(2) of the Social Security Act (42 U.S.C. 1395w-4(k)(2)) is amended by adding at the end the following new paragraphs:

`(3) Physician'S QUALITY REPORTING INITIATIVE-

`(A) IN GENERAL- For purposes of reporting data on quality measures for covered professional services furnished during 2011 and any subsequent year, to the extent that measures are available, the Secretary shall include quality measures on end of life care and advanced care planning that have been adopted or endorsed by a consensus-based organization, if appropriate. Such measures shall measure both the creation of and adherence to orders for life-sustaining treatment.

`(B) PROPOSED SET OF MEASURES- The Secretary shall publish in the Federal Register proposed quality measures on end of life care and advanced care planning that the Secretary determines are described in subparagraph (A) and would be appropriate for eligible professionals to use to submit data to the Secretary. The Secretary shall provide for a period of public comment on such set of measures before finalizing such proposed measures.'.

(c) Inclusion of Information in Medicare & You Handbook-

(1) MEDICARE & YOU HANDBOOK-

(A) IN GENERAL- Not later than 1 year after the date of the enactment of this Act, the Secretary of Health and Human Services shall update the online version of the Medicare & You Handbook to include the following:

(i) An explanation of advance care planning and advance directives, including--

(I) living wills;

(II) durable power of attorney;

(III) orders of life-sustaining treatment; and

(IV) health care proxies.

(ii) A description of Federal and State resources available to assist individuals and their families with advance care planning and advance directives, including--

(I) available State legal service organizations to assist individuals with advance care planning, including those organizations that receive funding pursuant to the Older Americans Act of 1965 (42 U.S.C. 93001 et seq.);

(II) website links or addresses for State-specific advance directive forms; and

(III) any additional information, as determined by the Secretary.

(B) UPDATE OF PAPER AND SUBSEQUENT VERSIONS- The Secretary shall include the information described in subparagraph (A) in all paper and electronic versions of the Medicare & You Handbook that are published on or after the date that is 1 year after the date of the enactment of this Act.

The Benefits of End of Life Conversations

This CNN.com article focuses on the benefits of end of life conversations between doctors and patients. A study from the March 2009 Archives of Internal Medicine, showing patients that discuss the end of life with their doctors had lower health care costs, and better quality of life.

Discussing end-of-life care is difficult for everyone involved, but it should be done early on, doctors say.

Many aging parents and grandparents resist talking about it because of the emotional pain the issue will cause their younger relatives; and the children who will become responsible don't want to appear ungrateful or self-serving by mentioning it, Kellerman said. Many doctors don't want to talk about it either, he said.

Music Therapy and Music-Thanatology

Inara Verzemnieks at The Oregonian writes about the role of music-thanatology at the end of life, and the eight new graduates of a two-year program in Portland.

Drawing from a tradition that traces back to the Middle Ages, when the monks of Cluny, France, included rituals of song in their care of the dying, modern-day music-thanatologists use harps and their voices to soothe the pains of people whose lives are ending. In Oregon, several hospitals and hospices and nursing homes offer the services of music-thanatologists to patients receiving palliative care.

To be clear: This is not about playing music for the sake of aesthetics. As music-thanatologists explain it, this is music used deliberately and specifically, like a medicine -- music that is carefully tailored to each person, based on information gleaned from the patient's chart, his or her vital signs, conversations with caregivers, as well as intense observation on the part of the music-thanatologists -- all with the intention of giving the patient whatever respite he or she needs most, whether it's a chance to sleep or to relax or to process bad news.

Paula Spencer at Caring Currents also writes about the benefits of music therapy for caregivers.

Music can't make the demands of caregiving go away, but it can make you more healthfully equipped to plow through those demands.

Music therapy is a fascinating and growing field, and you don't have to be the person who's sick to benefit.

In June, the inaugural conference of the International Association for Music and Medicine explored the countless ways tunes can help heal, whether you're recovering from surgery or cancer, coping with grief, having a baby -- or caring for an aging relative.

Advance Care Planning

The New Health Dialog’s Joanne Kenen has posted about the recent controversy over advance care planning involving the House health care reform bill. She includes excerpts from our letter to Fox News, and comments from AARP about advance care planning. Kenen writes:

An advanced directive does not mean you are choosing not to get care. You are choosing what kind of care you want to get. If you want aggressive, high-tech care in an ICU, you can say that. If you want a feeding tube and a ventilator, you can say that (and our system certainly is geared up to give it to you). If you want more palliative care, you can say that. If you want hospice, you can have it (Medicare has covered it for more than 25 years). But you don't have to have hospice, and health reform isn't going to change that.

There are a lot of different approaches to advanced directives (Five Wishes, POLST, health-care proxies to name some) but their purpose is to help old, sick, or vulnerable people, who may not be able to speak for themselves anymore, to live out their days according to their wishes, beliefs, and values.

We've let Fox News know how offensive we found the remarks made by Laura Ingraham on the O’Reilly Factor. We encourage you to do the same. Let Fox News know that more than a third of Americans with advanced terminal illness choose a natural and dignified death at home with the palliative care and comfort care offered by hospice, and that more education is needed about end-of-life care. Obviously, end-of-life care and the choices that people are entitled to make about their care, are still poorly understood.

Report to Congress on Advance Directives and Advance Care Planning Released

The U.S. Department of Health and Human Services (HHS) recently sent a report to Congress on advance care planning and advance directives. (Although dated August 2008, it was just received by Congress and posted on the HHS website.)

The report focuses on “the best ways to promote the use of advance directives and advance care planning among competent adults as a way to specify their wishes about end-of-life care.” It includes a literature review and analyses of key ethical and legal issues.

Hospice Foundation of America Sends Letter to The O'Reilly Factor Regarding Hospice, Advanced Directives, and Healthcare Reform

Hospice Foundation of America sent the following letter to Bill O'Reilly of The O'Reilly Factor on FOX News Network in response to a segment that appeared Monday, July 20, 2009.

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Mr. O’Reilly,

In yesterday’s segment on healthcare reform, your guest host Laura Ingraham addressed the requirement in the current healthcare bill that doctors periodically discuss advanced directives and end-of-life care options (including hospice care) with their patients. While doing so, she indirectly gave a startling and misleading characterization of hospice care: “Now I find that to be creepy, for the president of the United States to be saying basically, we hope more people—you old people, you get sick, you know, we encourage you to look at hospices… Go die. Go to a hospice and die.”

Hospice care is apolitical and Hospice Foundation of America is a nonpartisan public charity. Thus, we normally stay far away from political debates. However, Ms. Ingraham’s comments portraying hospice as merely a place to die and her suggestion that hospice advocates seek to shorten life are so wrong and so harmful that they must be addressed.

Hospice is not a place “to go to die” and those who support hospice do not wish death on the infirmed. As a philosophy of care, hospice seeks to add quality to the last weeks and months of life for those suffering from incurable illness. More than a third of Americans who die every year die in the care of hospice. The people who choose hospice do not choose to give up on life. Instead, they wish to spend their final moments at home with their loved ones, aided by doctors and nurses who specialize in pain management and supported by counselors and clergy who are experts in pastoral care. The decision to forego futile and oftentimes painful treatments to extend life by a few days or weeks is a deeply personal one and those who choose to do so deserve comfort and support, not scrutiny, as implied by Ms. Ingraham’s comments. We trust that, in a moment of intense debate, she misspoke, and hope she would welcome the chance to clarify her remarks. It should be noted that she lists a Washington, D.C. area hospice on her website as one of her favorite charities.

Regarding advanced directives, the proposed bill directs doctors to discuss advanced directives with their patients. Everyone, including those who are not ill, should have an advanced directive or healthcare proxy. Advanced directives are legal documents that state a person’s wishes regarding their care should they become incapacitated. They can call for a wide spectrum of action, from treatment that sustains life until the last possible moment to treatment that is meant only to ease pain. These documents prevent confusion at the end of life and make clear to doctors and family members a person’s wishes regarding various life-sustaining options. Advanced directives are different from do-not-resuscitate orders and the current bill contains no provision that instructs doctors to encourage their patients to forego any treatment. It only instructs them to make known the various treatment and care options. This is already standard procedure in operating rooms all across the country, even for the most standard of procedures. Physicians should, in fact, discuss end-of-life care options with their patients. With terminal patients, hospice should be a part of that discussion. Too often, doctors avoid any discussion of death with their patients. At Hospice Foundation of America, the most common complaint we hear from patients and families is that they wish they would have known about hospice sooner.

We respect the support that Ms. Ingraham has given to hospice in the past, yet viewers of your program should know the truth about hospice—that it is a compassionate service for those who have exhausted all curative options and wish to spend their final days at home instead of a hospital, where they can die as they lived, with dignity, respect, and the presence of those they love.

Amy Tucci
President & CEO
Hospice Foundation of America
Washington, DC
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Newspaper Profiles Family Caregivers of Veterans

The Pittsburgh Post-Gazette has published a two-part story on the family caregivers of veterans wounded in Iraq. Family members provide much of these veteran’s care, sometimes leaving jobs and communities to support their loved ones.

Part One follows Leslie Kammerdiener and her son Kevin, as she cares for him in Tampa, FL after leaving her Pennsylvania home.

Part Two includes a return visit home where Kevin receives a Purple Heart.

This related piece also discusses how family caregivers can neglect their own health care while supporting others.

Advance Care Planning Advice

Carolyn Clancy, M.D., the director of the U.S. Department of Health and Human Services' Agency for Healthcare Quality and Research writes columns on navigation the health care system. Her latest, "Talking about End-of-Life Treatment Decisions", discusses the importance of advance care planning between patients and their doctors, and other family members.

End-of-life planning involves some thought and effort, such as completing advance directives. In addition to talking about your wishes with your family members, you should also talk with your doctor. Most doctors welcome the chance to discuss such issues but may be hesitant to raise the topic.

We need more doctor-patient discussion in this area. As many as three-quarters of physicians whose patients had advance directives were unaware that those documents existed, according to research. And only 12 percent of patients with advance directives had received input from their doctor.

Discussing these matters increases the likelihood of getting your wishes met. Patients who are dying and family members who survive them say that lack of communication with doctors causes confusion about medical treatments, conditions, and choices that need to be made.

AHRQ-funded studies show that conversations with doctors about advance care planning led to increased satisfaction among patients age 65 years and older. Patients who talked with their families or physicians about their preferences for end-of-life care:

• Had less fear and anxiety.
• Felt they had more ability to influence and direct their medical care.
• Believed that their physicians had a better understanding of their wishes.
• Indicated a greater understanding and comfort level than they had before the discussion.

Yesterday, Google Health announced that they are making advance directive forms available with state-specific directions. You can find the forms by creating a Google Health account here.

Google Health made available "advance directive" forms on which people can specify what they want doctors to do or not do in the event they are too ill or injured to express their wishes.

Forms created with collaboration from an organization specializing in elder care are available free for download online and can be customized to the laws in US states, according to Roni Zeiger and Julie Wilner of the Google Health team.

"An advance directive allows you to determine your end-of-life wishes so that your family and doctor can honor them if you get sick and are unable to communicate," Wilner and Zeiger said in a message at Google's official blog.

"The decision to sign an advance directive is an important and personal one, and Google Health now makes it a little bit easier."

Insights into Dementia

These two recent posts tell personal stories of adult children caring for a parent with dementia. First, a blogger at Daily Kos shares how her and two of her sisters came together to care for their parents. The mother has dementia, but they did not realize the extent the disease was impacting her until their father died. She writes about the strain of caregiving, even with an extensive support system in place.

In the second, from the new Happy Days blog in The New York Times, Elizabeth Kadetsky writes about how her mother's diagnosis of Alzheimer's disease is changing her.

Today, at 69, she has less of that charisma — she has been diagnosed with the disease in its early to middle stages. But she has at least as much of a quality that I, earlier, modeled myself on, and later came to admire in her: a quirky, rather peculiar nature that could be summarized as an insistence on living in the moment. By concentrated meditation on the moment and each moment that follows, the yogi gains sacred knowledge. So these days, I sometimes believe I am not so much losing my mother as communicating, more and more so exclusively, with that side of her that exists only in the present.

New Physician Award Recognizes Quality End-of-Life Care

The Hastings Center and Cunniff-Dixon Foundation has announced a new award for physicians “who have shown their care of patients to be exemplary, a model of good medicine for other physicians, and a great benefit in advancing the centrality of end-of-life care as a basic part of the doctor-patient relationship.”

Richard Payne, MD, Director of the Duke Institute on Care at the End of Life and member of the award selection committee writes about the need for physicians to “be still” with their patients, and how this award will assist meeting that goal.

We’ve become technologically efficient enough to diagnose our patients without taking the time to be still and sit with them. Medical knowledge will always be incomplete if it lacks a relationship with the patient. It is only through relationship that values, personality, and soul emerge. These things make a body human as much as arms, legs, and organs. There can be no substitute for relationship in medical treatment.

Physicians truly do care for our patients. Unfortunately, the limitations of efficiency and business have caused many of us to lose sight of the person for all the care we provide. Physicians must slow down and be still in order to find relationships with their patients. Loud voices are needed to call us back to caring in the way of friends.

For these reasons we should applaud the wise decision of the Cunniff-Dixon Foundation and the Hastings Bioethics Center to begin a new award to recognize caring physicians. The purpose of the award is to hold up role models of clinical and doctoring practice in palliative and end-of-life care that focus on relationships as an integral part of medical care.

Nominations for the four awards, totaling $95,000, are being accepted until September 26, 2009.

End of Life Met Openly Among Sisters

The New York Times ran a piece last week about how members face death at the Sisters of St. Joseph convent in Rochester, New York.

A convent is a world apart, unduplicable. But the Sisters of St. Joseph, a congregation in this Rochester suburb, animate many factors that studies say contribute to successful aging and a gentle death — none of which require this special setting. These include a large social network, intellectual stimulation, continued engagement in life and spiritual beliefs, as well as health care guided by the less-is-more principles of palliative and hospice care — trends that are moving from the fringes to the mainstream.

For the elderly and infirm Roman Catholic sisters here, all of this takes place in a Mother House designed like a secular retirement community for a congregation that is literally dying off, like so many religious orders. On average, one sister dies each month, right here, not in the hospital, because few choose aggressive medical intervention at the end of life, although they are welcome to it if they want.

“We approach our living and our dying in the same way, with discernment,” said Sister Mary Lou Mitchell, the congregation president. “Maybe this is one of the messages we can send to society, by modeling it.”

Primary care for most of the ailing sisters is provided by Dr. Robert C. McCann, a geriatrician at the University of Rochester, who says that through a combination of philosophy and happenstance, “they have better deaths than any I’ve ever seen.”

There is an accompanying audio slideshow and comments in the New Old Age blog.

Unique Challenges of Caregiving Among Aging Immigrants

In this Health Affairs journal article, Julia Alvarez writes eloquently about the additional difficulties in providing care for aging parents among immigrant populations in the United States. In this case, her parents chose to return to their native Dominican Republic to live as they grew older. Due to subsequent health issues, this long distance relationship between her parents and her sisters created many challenges in providing appropriate care. Alvarez points out that in addition to generational differences, the family had many cultural differences to address as well. When her parents announced their decision, she and her sisters were upset, Alvarez writes.

"It’s not fair," my sisters and I protested. We were still in the middle of busy professional and familial lives. Couldn’t they come live where it would be easier for us to stay connected to them?

Just their astonishment was a sign of the cultural gulf between us. We were thinking in that First-World way where the young are the focus and fuel in our fast-paced, youth-obsessed U.S.A. But our parents were formed in that old-world culture where the elders hold the power and the young respect their wisdom and defer to their wishes. Even the physical layout of our houses when I was a young child in the Dominican Republic showed this different power arrangement: my grandparents lived in the central house with all their adult children’s houses built as satellites around theirs. In this country we live in our individual houses and apartments, scattered from our birth families, with our elders segregated in their residences and nursing homes, at a distance from us. No wonder my parents wanted to go back to a more simpatico, companionable way of growing old, surrounded by their young.

Our clamoring self-centeredness as their children and their nostalgia and yearning for an older way of life for their older lives obscured the simple, most obvious fact: their young—now not so young—were all here now.

"You’re grown up. You can take care of yourselves," my mother kept reminding us, even as she swept back hair from our eyes or brushed the lint from our winter coats. But, in fact, the issue we were soon to face was not whether we could take care of ourselves, but how we were going to take care of them as they began to decline.

Considering Hospice Benefits

Kathie Campbell, a marketing director for Hospice of the Panhandle in West Virginia, writes about some of the benefits of hospice care, and urges her community to take advantage of their services.

Think for a minute. Think about your family, friends, neighbors, co-workers. Think about the people with whom you go to church and the people you see in the grocery store. Think about those with whom you share a hobby or attend club meetings. Think about the people you meet at your children's school. Of all those people - the people you relate to day in and day out - it is probable that at least one of them would benefit from hospice but is not receiving the service.

In 2008, just 32 percent of all the people who died from end-stage illness in the Eastern Panhandle died under the care of hospice (45 percent of that one third had just one month of care or less). Close to 1,000 people died in Berkeley, Hampshire, Jefferson and Morgan counties in 2008 without any support from hospice.

Think about this for another minute. Those nearly 1,000 people - people we know - suffered with the challenges of advanced disease alone, without the team of professionals and volunteers that cares for the patient while also supporting the family and caregivers. They never had access to the 24-hour, on-call support that would have prevented unnecessary trips to the emergency room or admissions to the hospital. They did not have the expert pain and symptom management from the hospice nurses and physicians. And they never reaped the financial benefit of hospice, a program that includes professional staff visits to the home, medicines, treatments, equipment, supplies, respite care, crisis care, hospitalization and bereavement care for the survivors - all fully covered by Medicare, Medicaid and most private insurers. All these people missed out on one of the best health care programs available today.

When Others Make End of Life Choices

On the How We Die website, clinical bioethicist Viki Kind discusses her role on a hospital “advocate team”, that makes decisions about end-of-life when a patient has no advance directives, or family or friends to help guide these decisions.

One of the hardest things for me to witness is when a patient has no one to speak for them at the end. We call this person the unrepresented patient or the unbefriended person. This is someone without any friends or family who can make sure they have a good death.

So what happens to them? In some cases, a public conservator or guardian is appointed to make their decisions for them. This is a stranger making decisions for another stranger. There is nothing personal or meaningful in this process.

If there isn’t a guardian available, a group of people at the hospital will make the decision for this person. Sometimes we call this an advocate team or a moral community. This group usually consists of a doctor, nurse, social worker, chaplain, members of the ethics committee and community members. As a group they will make the decision whether someone should live or die. Unfortunately this decision is based on very little information about who the person is or what is important to them in their life. It is usually a medical decision instead of a human decision. Not that the advocate team doesn’t try to make it personal.

Providing Elder Care in a Recession

Last week The Sacramento Bee published an article about the increase in elders living with their adult children, as economic difficulties put a financial strain on their ability to live independently or to afford other types of assisted living arrangements.

California trails only Hawaii in its percentage of multigenerational family households, according to AARP statistics. Beyond cultural norms, tough economic conditions often play a part in families' decisions to house or move in with their elders.

At the same time, retirement communities and upscale assisted living centers that once had long waiting lists find themselves slammed with vacancies, says the National Investment Center for the Seniors Housing & Care Industry.

The problem? Plummeting home prices have discouraged seniors from cashing out of their existing homes.

Given a choice, most seniors would prefer to continue living independently. But among health issues, economic pressures and diminishing public resources, that's not always possible.

Also last week, Paula Span wrote in the New Old Age blog about formal caregiving contracts, where a family member provides paid caregiving for an elder under a formal contract.

The elderly mother wanted to avoid a nursing home and remain in her house in Kansas City, but she needed hands-on help. The daughter, a nurse at a local hospital, was willing to shoulder responsibility for her mother’s care but couldn’t afford to lose income by substantially scaling back her work schedule.

So elder law attorney Craig Reaves drew up a care contract, specifying that the daughter would help her mother a certain number of hours each week and perform particular duties, for which her mother would pay the same hourly wage her daughter would have earned at the hospital. “The whole family agreed that this was fair,” said Mr. Reaves, immediate past president of the National Academy of Elder Law Attorneys.

July Palliative Care Grand Rounds Available

The sixth edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up the Palliative Care Success blog.

Open Discussions Best for End-of-Life Care

A study from Open Medicine surveys 440 patients with terminal illness and 160 family members from five Canadian hospitals. This article includes an interview with one of the researchers:

Only 18 per cent of patients and 30 per cent of families said they discussed the prognosis with their doctors,even among very sick patients with more than 50 per cent probability of death within the next few months,the study found.

This has to change, said Heyland, professor of medicine at Queen's and research director at the clinical evaluation research unit at Kingston General Hospital.

Patients with terminal illness and their families who had open and honest discussions with their doctors were more satisfied with the level of care given and had time to prepare for the impending death.

. . .

"Some are just uncomfortable talking about death and dying," Heyland said, adding that it can be time-consuming for doctors with many other patients to see.

Social workers and ethicists can help by getting the conversation going so patients and their families are better prepared for making critical decisions when they meet with a doctor, Heyland said. He warned, however, that some patients and their families don't want to have end-of-life discussions with a doctor.

In those cases, he said, having such a conversation can have the opposite effect and make matters worse - as can a poorly handled discussion.

Music Therapy Part of Hospice Care

This article talks about the role of a hospice music therapist in Minnesota.

One of music therapist Julie Szamocki's patients is an elderly woman in the later stages of Alzheimer's disease.

The woman is unable to carry on a meaningful conversation anymore. When she does speak, it rarely has any relationship to the time or place she happens to be in.

Yet her memory for music remains largely unimpaired. And so last week, without the aid of a musical instrument, Szamocki began to sing a series of old-time songs with her patient, whose agile singing voice was soon harmonizing with her own.

In the hospice community, they call it being present in the moment, and it was clear that Szamocki had reached that moment with her patient, who was soon looking down the hallway and waving people to come over and listen.

"She was so pleased with herself, because she knew she was making this beautiful music, and she knew she was being successful," said Szamocki, who joined the staff at Seasons Hospice in September as the organization's first music therapist.

The American Music Therapy Association reports that there are 250 music therapists in the country whose practice is devoted to the terminally ill.

Pet Peace of Mind Program for Hospice Patients

This USA TODAY article covers a program started a Oklahoma hospice, to help take care of the pets of hospice patients. The program has received a grant to develop and promote the program to non-profit hospices across the U.S.

The Pet Peace of Mind Program that Taylor McNac developed provides not only pet food, vet care, meds for older animals with arthritis or other chronic disease, flea and tick control, and vaccinations, but also sends volunteers to walk dogs, make runs to the groomer, or provides transportation for any other pet need.