Palliative Care Helps Quality of Life for Sick | The Daily Journal | thedailyjournal.com

Written by LIZ SZABO -USA Today

There are no secret passwords in medicine, no mysterious handshakes or signals to use when seeking the best care for a serious illness.

But experts say two words come close: palliative care.

Many people have never heard of palliative care, a comprehensive service that aims to relieve suffering in people with serious illnesses, such as cancer, lung disease or kidney failure.

Some patients and even many doctors confuse palliative medicine with hospice, a form of palliative care for people in the last six months of life. Other patients mistakenly worry that doctors won't work as hard to cure them if they ask for palliative care, says Gail Cooney, former president of the American Academy of Hospice and Palliative Medicine.

Those notions could change in light of recent research.
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In The Last 6 Months Of Life, Medicare Costs Are Driven By Patient Variables Twice As Much As Geography

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A study by Mount Sinai School of Medicine finds that Medicare costs at the end of life are influenced more by patient characteristics, such as ability to function, the severity of the illness, and family support than by regional factors, such as the number of hospital beds available. The study will be published February 15 in The Annals of Internal Medicine.

"These new findings show that the reasons for wide variation in Medicare costs across the United States are much more complicated than previously thought," said lead author Amy Kelley, MD, Assistant Professor in the Department of Geriatrics and Palliative Medicine at Mount Sinai School of Medicine. "The health care system should address the specific needs of patients, rather than focusing solely on the difference we see across regions. That means we need to extend care beyond the standard single disease-oriented models of care," added Dr. Kelley.

Prior studies had shown dramatic geographic variation in Medicare costs among people with chronic illnesses, especially near the end of life. However, they did not take into account individual patient characteristics, such as a person's ability to walk and take care of themselves, day-to-day.

For this new study, researchers from Mount Sinai and the University of California, Los Angeles (UCLA) examined 2,400 older adults from across the United States, as well as characteristics of their local health care system, to explore which factors were related to Medicare expenses in their last six months of life. Impairment or decline in a person's function, or the ability to take care of him or herself, was a strong predictor of higher Medicare costs - even more so than their medical conditions.

Regional factors, such as having more hospital beds or a pattern of high-intensity practice also predicted higher Medicare expenses. But overall, this study determined that patient characteristics explained ten percent of the Medicare cost variation, double the cost variation attributed to regional factors - five percent.

"This raises additional questions that future research will need to address, such as why it is that having family nearby is associated with lower Medicare costs," said Catherine Sarkisian, MD, Associate Professor in the Division of Geriatrics at UCLA and senior author on the study. "Having a caregiver available may help people avoid undesired hospital stays. If so, future research must look at the impact on families that take on the expense and burden of care giving."

According to Dr. Kelley, the study's findings suggest that, "Health care reform will have the greatest impact on reducing costs if we focus on providing well-coordinated, high-quality care for the most complicated patients and their family caregivers."

Source:
Mount Sinai
The Mount Sinai Hospital / Mount Sinai School of Medicine

You're Sick. It's Serious.

The American Academy of Hospice and Palliative Medicine has just released a new video called "You're Sick. It's Serious."

Peace Accord Reached Between Geriatrics and Palliative Care Professional Societies | GeriPal - Geriatrics and Palliative Care Blog

by: Wikileaks

Boards for the major professional societies for geriatrics (AGS) and hospice and palliative medicine (AAHPM) have reached an agreement on collaborative efforts. The agreement was drafted following a conference in New York.

Here is the joint statement:

BACKGROUND

The Geri-Pal Workgroup has focused its collaborative efforts between the disciplines of geriatrics and palliative medicine in the following five areas: Workforce, Research, Education, Policy and Membership Communication. The following summaries provide specific recommendations in each area for the AAHPM Board to consider.

Workforce
Due to the continued growth of advanced and serious illness among older adults, it is imperative that aggressive steps be taken to increase the workforce with training in advanced and complex illness care. It is likely that both for the field of geriatrics and palliative medicine that workforce will be inadequate to address population needs. The Geri-Pal workgroup recommends

1) ongoing dialogue between both specialties on ways to train mid-career physicians (since fellowship training won’t meet workforce need);

2) better understanding of current workforce issues in palliative medicine and geriatrics through incorporation of questions into the AGS annual workforce study (See appendix) and the proposed academic palliative medicine survey and communication of these findings to both organizations;

3) identification of areas of resistance to collaboration between both specialties;

4) delineation of unique and overlapping competencies for both specialties; and

5) support by both organizations/disciplines for Geriatric Academic Career Awards and Palliative Academic Career Awards.

Research
Very little research addresses advanced illness/multimorbidity/symptom management in older adults. Despite the large number of people affected, funding for these areas are also thin. The Geri-Pal workgroup recommends

1) joint advocacy for research in these areas;

2) increased communication to relevant stakeholders regarding the research vacuum in geri-pal research;

3) initiation of a joint strategic initiative to increase funding in these areas through State of the Art conferences, an Institute of Medicine conference for targeted topics, and interaction by the Geri-Pal workgroup and other AGS/AAHPM leaders with key research and policy stakeholders.

Education
Based on the identified overlap of shared goals in the care for older adults with advanced illness and a cross-over of more than 300 members, a pilot exercise to educate each organization’s membership during their Annual Meetings was viewed as successful. Both organizations completed the following activities in 2009/2010:

• an exhibit booth exchange allowing each organization to have a presence at the other’s annual conference;

• development of a pre-conference session offered at both the 2010 AGS conference and the 2011 AAHPM conference.

Based on high evaluation scores and good attendance for the pre-conferences and notable interest at the exhibit booths, continued inclusion of exhibit booths and sessions is being sought for the 2011 and 2012 annual meetings of AGS and AAHPM respectively. The AGS Annual Meeting Program Committee has considered this request and approved moving forward with a pre-conference at the AGS 2011 Annual Meeting. AAHPM will consider this for its 2012 planning committee meeting.

In addition, AGS and AAHPM have continued the exchange of products. AGS is providing Geriatrics at Your Fingertips to AAHPM at its member price and AAHPM is providing the Primer at the AAHPM member price during certain time periods throughout the year.

Policy
Given the important issues confronting providers working in geriatrics and palliative medicine, especially in the coming decade as health reform is implemented, it will be crucial to speak with one voice, synergistically, on matters relevant to medical care of persons of advance age, and those nearing the end of life. To that end, the Geri-Pal workgroup recommends to the leadership and membership of the AAHPM and AGS to:

1) Concur on matters of mutual clinical and policy import;

2) Share policy and advocacy initiatives regularly to highlight areas of mutual interest and emphasis;

3) Share “talking points” related to (2);

4) Prepare statements and political approaches to “hot button” issues, including but not limited to - rationing, health care reform, end of life care, Medicare cost-cutting initiatives, and

5) Share mechanisms of mobilizing membership to accomplish shared goals of the AAHPM and AGS.

Communication to memberships
To demonstrate the growing collaboration between the two fields of geriatrics and palliative medicine, the Geri-Pal workgroup recommends ongoing communicating to both organizations’ memberships regarding activities of the workgroup and two organizations that highlight this collaboration. The Geri-Pal workgroup recommends:

1) Regular updates in the AGS newsletter (sent quarterly), the AGS Week in Review (weekly), and the AAHPM newsletter (sent quarterly) and 

2) Development of a joint position statement and issue brief addressing the need for integration of geriatric and palliative medicine, the importance of funding the care provided, and the need for training programs that facilitate training at the intersection of the fields and are not barriers to training in both areas.

Workgroup members:
Chair, Christine Ritchie, University of Alabama at Birmingham
Bob Arnold, University of Pittsburgh
Jean Kutner, University of Colorado Denver HSC
Seth Landefeld, University of California at San Francisco
Bruce Leff, John Hopkins University
Wayne McCormick, University of Washington
Greg Sachs, Indiana University

RECOMMENDATION
The Membership and Communities SCC has reviewed the proposal as submitted by the Geri-Pal Workgroup and recommends ongoing collaboration between the disciplines of geriatrics and palliative medicine to focus on the areas/issues noted above.
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Palliative CareRresearchers Tackle Whether to Stop Statins for Terminally Ill

By Kevin B. O'Reilly, amednews staff

Patients' lives might be improved if freed of nagging side effects of the medications, but some doctors express concern about shortened survival times.

Research in palliative medicine is moving into determining what kinds of care can be withdrawn safely for patients near the end of life, say doctors behind a new research consortium.
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Making the Most of Washington’s Change of Mind on End-of-Life Planning

excerpt from Transcend Hospice Marketing Group blog

Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization, said, “By having Medicare cover these voluntary consultations, beneficiaries will be able to get information that will help them make their own decisions about their care and what they would or would not want at life’s end.”

While we may not have predicted a change of mind regarding the end-of-life planning provision in Medicare legislation, this recent turn of events underscores the vital importance of hospices teaching their local communities the truth about the benefits of hospice care. While Medicare may not be facilitating advance care planning, there’s nothing stopping hospice organizations from stepping to the plate and engaging their local communities in conversations about options for care and support and the end of life. Go take advantage of the opportunity!

Transcend Hospice Marketing - Making the Most of Washington’s Change of Mind on End-of-Life Planning

Death Panel Legacy | GeriPal - Geriatrics and Palliative Care Blog

by Alex Smith in the GeriPal blog

Yesterday, legislation that would have reimbursed physicians for advance care planning discussions was stripped from Medicare regulations related to the Affordable Care Act (Health Care Reform Bill).

This was the second time such language was removed. The first time, of course, occurred during debate over the bill in congress. Sarah Palin said she did not want Obama's "death panels" to decide who was worthy of care. John Boehner (now house speaker) said the legislation was part of a slippery slope toward government sponsored euthanasia. Not only was advance care planning legislation stripped from the bill, so were all measures related to palliative and end-of-life care. We didn't blog about this at GeriPal because representative Bleumenauer, author of the original legislation, cautioned against crowing about it, suggesting it should be a "quiet victory."

What the administration couldn't get through congress it has turned to regulation to accomplish. On Christmas 2010, the New York Times broke the story that the Obama administration and Don Berwick, director of the Centers for Medicare and Medicaid, incorporated language into Medicare regulations related to the health care bill that would reimburse physicians for voluntary advance care planning discussions during the newly covered annual visit.

Now, preparing to defend the health care bill against a new republican majority in the house intent on repealing the Affordable Care Act, Obama has reversed course. They claim the language was removed for procedural reasons, but anyone can read between the lines.

A few thoughts about this.

Physicians should be reimbursed for time spent conducting advance care planning discussions with patients. This will incentivize high quality care. Lack of reimbursement for these long discussions is a major barrier to outpatient doctors engaging patients in the advance care planning process.

On the other hand, if I were to chose palliative care priorities for the Obama administration to focus on, this would not be tops on my list. Other issues I would rank higher (thanks to Diane Meier for many of these):

• Funding for palliative care graduate medical education (fellowship spots)
• Funding for palliative care research
• Incorporating palliative care into Accountable Care Organizations

And if I had a choice between legislation/regulation the includes advance care planning, but was likely to get hammered in congressional debate and sink as a result, and legislation/regulation without the language but with all of the other good things the Affordable Care Act accomplishes...I'd take health care reform.

This issue is important. It's just not worth the Obama administration falling on it's sword.

A Negative Palliative Care Trial? | GeriPal - Geriatrics and Palliative Care Blog

from GeriPal Blog

There has been a lot of good news about palliative care in the last year. Most notably is one well designed randomized control trial (RTC) finding improved survival and quality of life for stage IV lung cancer patients receiving outpatient palliative care consultations. This line of evidence has been particularly important for those of us attempting to grow palliative care programs both in the inpatient and outpatient arena. But, what should we do when the results of a RTC of inpatient palliative care consultations come up negative? Should we ignore these findings, dispute them, or acquiesce? These are the questions that I am grappling with after reading a research letter in the Archives of Internal Medicine by Dr. Steven Pantilat and colleagues.


Full Article

Age Discrimination in Clinical Research: Time For Action | GeriPal - Geriatrics and Palliative Care Blog

Image via WikipediaOlder persons are often severely underrepresented in clinical trials of new drugs, therapies, and devices. Usually, their exclusion from these studies can not be scientifically justified. Some studies actually have age cutoffs, but more often the exclusion of older persons is more indirect. For example, most older persons have more than one disease. A study of a treatment for disease X may exclude a person who also happens to have disease Y, even though persons with disease Y will be part of the target population for therapy once the treatment is approved. Sometimes, the exclusion of the elderly is even more subtle---such as excluding subjects who need transportation assistance to get to the study center.

The exclusion of older persons from clinical studies, whether through direct exclusion of older persons, or indirect exclusions based on factors such as comorbidity or functional impairment is rarely justificable. If an elder would be a realistic candidate for the therapy being studied, there is no valid reason for their exclusion.

The absence of older persons from clinical studies has adversely impacted our ability to care for them. For a multitude of problems common in older persons, the best approach to care is not clear because we have minimal research which informs what works and what does not work in older persons.

These concerns are discussed in an excellent article in the Journal of American Geriatrics Society titled, "Fighting Age Discrimination in Clinical Trials." The article examines many of the barriers that have inhibited enrollment of older persons in clinical research and proposes solutions. It calls for steps to end age discrimination in clinical trials.

Age Discrimination in Clinical Research: Time For Action | GeriPal - Geriatrics and Palliative Care Blog

TIME GOES BY | GRAY MATTERS: Of Death Panels and Palliative Care

by Saul Friedman (bio) writes the weekly Gray Matters column which appears in the Time Goes By blog each Saturday. Links to past Gray Matters columns can be found here. Saul's Reflections column, in which he comments on news, politics and social issues from his perspective as one of the younger members of the greatest generation, also appears at Time Goes By twice each month.

I assume you recall the summer of the “death panels.” That was last year when a few right-wing demagogues led by Sara Palin (who else?) warned that the health care reforms under debate would lead to deaths of patients whom doctors considered too old or ill to treat. Now we know they probably helped hasten the deaths of the desperately ill.

Here’s the background. In August, 2009, with the help of unthinking journalism and, naturally, the Fox loudmouths, Glenn Beck and Rush Limbaugh, the phrase “death panels” set off a fury of raucous town meetings with organized right-wing plants stirring up the mob, bringing confused innocents along with them on a tide of anger.

Few would listen to or even allow speakers, members of Congress, to explain the issue and call the lies for what they were. Even veteran Senator Charles Grassley, R-Iowa, who helped write the reform bill (he voted against), told a crowd that there was a genuine fear that “Granny” would die at the hands of a death panel. He regretted that stupidity, but the damage was done.

The section of the reform legislation that caused the furor, which was introduced by a Republican, was optional and totally benign. It merely authorized Medicare (and insurance companies) to pay physicians for their services if, during a period of five years, they are asked to and provide counsel to patients on alternatives to treatment, including hospice or palliative care.

Republicans and assorted right-wingers who did not support any health care reform cried “euthanasia.”
Cowed and frightened by the furor, President Obama and Democratic sponsors of the health reforms deleted the section. There have been sad consequences. Those fear mongers who raised the false alarm of “death panels” may have been responsible for the early deaths of terminally ill patients, who could have lived longer and more comfortably, free of pain, with hospice or palliative care.

That is one of the conclusions of a study in the August 18 New England Journal of Medicine on the value of palliative care for terminally ill patients. As The New York Times reported,

“[D]octors have found that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier and in less pain as the end neared – but they lived nearly three months longer...The findings...confirmed what palliative care specialists had long suspected. The study also, experts said, cast doubt on the decision to strike end-of-life provisions from the health care overhaul passed last year.”

Palliative care, which is optional for the patient, means forgoing curative treatment such as surgery, radiation or chemotherapy any of which may be more painful or debilitating than the disease.

A physician, whose office visits, exams and treatments are partly covered by Medicare, may also advise a patient (for no extra fee) on the possibility of palliative care. If the doctor states that the patient has less than six months to live, the palliative care (which may include pain-killing drugs, physical examinations, and even chemotherapy that is not meant to cure) is usually provided by a hospice organization whose services are fully covered by Medicare.

And, as I’ve written, hospice care won’t end if the patient lives beyond those six months. It’s called “open access.”

Indeed (a personal acknowledgment), I have been on ‘open access” palliative care, with the help of the Hospice of the Chesapeake, for more than six months because the cancer I’m fighting seems not to be growing. I live with uncertainty, but I have the comfort of knowing the hospice professionals are there to help if things change.

Dr. Diane E. Meier, director of Mount Sinai School of Medicine’s Center to Advance Palliative Care told the Times, the study

“...shows that palliative care is the opposite of all that rhetoric about ‘death panels.’ It’s not about killing Granny; it’s about keeping Granny alive as long as possible – with the best quality of life.”

Dr. Atul Gawande, a Harvard Medical School surgeon who has written long articles on medical care for the New Yorker, called the results of the study “amazing.” His latest article, Letting Go – What Should Medicine Do When it Can’t Save Your Life, recounts the long suffering of patients who chose to fight cancer with radiation, surgery or poisonous chemotherapy before their deaths.

As the Times reported, while the study could not determine why the patients lived longer, experts pointed out that depression and constant pain deprived patients of sleep, and chemotherapy means th loss of appetite, nausea, hair loss and other debilitating side effects.

Dr. Sean Morrison, president of the American Academy of Hospice and Palliative Medicine, told the Times that the study was the

“...first concrete evidence of what a lot of us have seen in our practices – when you control pain and other symptoms, people not only feel better, they live longer.”

Of course, depending on the diagnosis and prognosis, some people opt for any treatment no matter how painful to fight their disease. But there is no way of knowing how many people have been denied access to hospice and the comforts of palliative care for their terminal or extended illness, which may not be cancer. And there is no way of knowing how many people were denied a longer, better quality of life.

But my hospice social worker pointed out that many doctors are more inclined to treat illnesses and try for a cure than suggesting palliative care. That’s part of their training. End-of-life counseling and palliative care are fairly new developments in dealing with illness.

If my case is an indication of the process, my oncologist did not know how my cancer was progressing, but he told me that some chemotherapy could not cure it or get rid of it, but may curb its growth. That meant palliative, non-curative care. I could have opted for more aggressive treatment. But I was admitted to hospice, which has cared for me ever since, sparing me from having to go to emergency rooms for small problems. As luck would have it, something, perhaps the chemo, stopped the progress of the cancer – for now.

I’m not accusing doctors of being greedy but under our system, the vast medical industrial establishment of physicians, specialists, hospitals and labs get paid more by Medicare and insurance companies for the expensive efforts to cure, which may include CT scans, MRIs, blood tests, radiation, chemotherapy and surgery. And they have great investments in buildings and technology to pay for.

In addition, there is a natural conflict between palliative care specialists and oncologists and surgeons who are battling cancer and see palliative care as “giving up.”

Because of the “death panels” furor, doctors won’t get paid (the fees would have been relatively small) to counsel on end-of-life decisions for Medicare patients. But with that section no longer part of the health reforms, privately insured patients in their fifties who have spreading cancers or other terminal illnesses will have difficulty getting covered for getting access to information about palliative care and hospice unless the physician volunteers it.

A note to Sarah Palin, et al: your death panels rants have probably denied at least some Grannies of a longer, more comfortable life.

Write saulfriedman@comcast.net
TIME GOES BY | GRAY MATTERS: Of Death Panels and Palliative Care

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Personal Health - New York Law Encourages Frank Talk on Palliative Care - NYTimes.com

Image via CrunchBaseby Jane Brody

Legislators have begun to recognize the medical, humanitarian and economic value of helping terminally ill patients and their families navigate treatment options as they approach the end of life.

Last week, over the objections of New York State’s medical society, Gov. David A. Paterson signed into law a bill — the New York Palliative Care Information Act — requiring physicians who treat patients with a terminal illness or condition to offer them or their representatives information about prognosis and options for end-of-life care, including aggressive pain management and hospice care as well as the possibilities for further life-sustaining treatment.
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An Alternative to the Feeding Tube - The New Old Age Blog - NYTimes.com

Image via CrunchBase

The Times reports today on a new option in palliative care called “comfort feeding only.”

At issue: Feeding tubes do not necessarily prolong life in patients with advanced dementia, and surveys indicate that a vast majority of nursing home residents say they would rather die than live with a feeding tube.

But medical orders like “no artificial hydration and nutrition” — used to indicate that the patient should not be given a feeding tube — are often interpreted as “do not feed.” And few people can tolerate the idea that a loved one may be starving to death.

Comfort feeding offers another alternative.

“Just imagine someone interacting with the patient, talking to them, cueing them into eating,” said Dr. Joan Teno, a professor of community health at Brown University’s medical school, “as opposed to someone walking to the bedside and pouring a bottle of Ensure down the feeding tube.”

Read the full article

GRAY MATTERS: Assisted Death

by Saul Friedman (bio)

 The poet Dylan Thomas said it best for those of us of advanced age: “Do not go gentle into that good night; rage, rage against the dying of the light.” But what if there is no good alternative to quietly turning out your light?

In Connecticut, the home state of insurance giants, a legal and moral battle rages that may have national implications as two physicians have sued the state for an action that could eventually allow patients to choose a peaceful, drug-induced death to avoid the pain and terrors of a terminal illness.
As CNN's Randy Kaye reported,

“While courts have addressed constitutional questions connected with aid in dying, no court has directly considered whether a mentally competent, terminally ill patient’s desire to bring about a peaceful death should be considered a ‘suicide.’”

That’s vital, for a suicide is generally against the law and the family of the person who dies may suffer spiritually and legally, including the loss of insurance and other claims.
 
Thus, Connecticut physicians Dr. Gary Blick and Ron Levine are suing the state, asking that the state’s laws restricting assisted suicides should not include cases in which mentally competent, terminally ill patients take their own lives to avoid pain and suffering.

The suit, which a superior court judge has dismissed on technical grounds, was prompted in part by several cases in which people have been punished for helping friends or relatives to die. Right to die advocacy groups are expected to appeal.

In the most publicized case, in 2004, John Welles, who was dying of cancer and suffering, pleaded with a friend, Hunt Williams, to give him a pistol. Williams did as his friend asked. As Welles walked away in the woods, Williams shouted “God bless” and heard the gunshot. Welles died and Williams was convicted of “assisting a suicide,” a felony in the state.

Blick’s suit was aimed, in part, to clear and free Williams and win permission to end a dying patient’s suffering. Said Blick,

“We’re not talking about hooking up a potassium chloride drip and have our patient’s heart stopped. We’re talking about terminally ill patients who I’ve counseled over the years and that I would like to give them prescriptions and help them die with dignity.”

Blick, the Medical and Research Director of CIRCLE Medical, is a specialist in infectious diseases and HIV-AIDS, which raised for me a question. Not a few years ago, AIDS was considered always fatal. Now it’s not. How many AIDS patients took their lives, rather than wait for the life-saving treatments now available?

Nevertheless, if Blick and Levine are successful in their campaign, Connecticut could join a growing number of states that recognize the right of a terminally ill patient to end his/her life with the help of a physician.

The recent HBO film, You Don’t Know Jack, was a sympathetic portrait of Jack Kevorkian who was jailed for helping a number of people die, most them not his patients. But he brought the issue to a life that is growing. Recent polls indicate that 60 percent of whites (38 percent of blacks) favor allowing physicians to assist the terminally ill to die.

By all accounts, Oregon’s pioneering “Death With Dignity” law has been doing what was intended. The 1998 law (which has been copied in Washington state) has survived legal challenges including protests by members of Congress because of its safeguards. A physician must determine that the patient has less than six months. and a second opinion is required. The patient must make repeated requests, waiting at least 15 days between requests.

If these procedures are followed, an Oregon physician can prescribe the life-ending drugs, which may be taken with or without a doctor present. In this way about 30 persons a year have gone through the process and died, usually with close family members present. Most of the patients were suffering from advanced cancer or ALS (Lou Gehrig’s Disease).

Leading medical institutions, Harvard Medical School and organizations such as the American Medical Women’s Association, the American Medical Student Association and the American Public Health Association support legislation permitting physicians to assist terminally ill patients to take their lives with drugs.

The American Medical Association stands opposed. And the American Academy of Hospice and Palliative Medicine is neutral, possibly because proper hospice care (in which I am now a participant) can avoid the need to take one’s life and even put off death.

But in the end, hospice provides for pain free and comfortable last days with the help of a hospice nurse to tend to the patient and a hospice social worker to work with the family.

Much of the opposition to assisted death also comes from the severely disabled and persons with serious chronic diseases. They fear, with some justice, that they and people like them will be vulnerable if, for example, their insurance companies balk at the cost of their care. Remember former Colorado governor Richard Lamm telling such people to “get out of the way” because they were costing Medicare too much money?

Other opposition comes from religious institutions and right-to-life organizations who also oppose elective abortions. I disagree, of course, but I believe that just as the state should stay out of a woman’s right to choose, so the state should not need to come between a dying patient and his/her right to choose the manner and time of his/her death.

Oregon’s statute, I admit, is a model of regulation for the safety of the patient’s rights and to guard against abuse - say by relatives who can no longer care for the patient. But the choice of hospice seems to be minimized. That’s why I’m uncomfortable with such organizations like Compassion and Choices, which seems to advocate an end-to-life as if it were a walk in the park.

They may encourage people to seek the alleged comfort of death for no good reason. A woman I know whose medical problems are serious but not life threatening seems to have given up on life because she’s despondent over the death of her husband.

End-of-life advocates seem to provide little encouragement to fight a disease, as I am, and the reasons for their despondency, the better to hang onto life and “rage against the dying of the light.”

As another, more gentle poet, Robert Frost. has written, “The woods are lovely, dark and deep. But I have promises to keep and miles to go before I sleep. Miles to go before I sleep.”

Write saulfriedman@comcast.net

http://www.timegoesby.net/weblog/2010/06/gray-matters-assisted-death.html

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TIME GOES BY | GRAY MATTERS: Hospice

by Pulitzer Prize-winning journalist Saul Friedman

My cancer doctor told me in writing, that I had six months to live. But he acknowledged he could not be sure and that the six months could be extended indefinitely.

That made me eligible to take advantage of a little understood, free Medicare program that has been enhanced by the new health insurance reforms, and could be available to anyone with a prolonged, chronic, life-threatening illness. I’m talking about the Medicare/Medicaid hospice program.

Until recently, entering a hospice program was frightening because it meant you understood you were dying and you voluntarily agreed to forgo chemotherapy or any other curative treatment, and were given only palliatives, painkillers and bedside help from professional whose job it was to make you comfortable.

All that has changed. As Dylan Thomas told us, we should “not go gentle into that good night.” So hospice should no longer be feared and avoided like the “dying of the light.” Rather, it should be embraced as a fine, comprehensive, home health care program.

A little background: In 1995, Medicare was under assault from the Republican Congress led by Newt Gingrich. Specifically, Medicare’s funds were cut to pay for private Medicare HMOs. And Medicare was criticized for the amount of money it was spending on the care of beneficiaries in the last year of their lives. Indeed, it accounted for a third of Medicare spending.

Medicare responded with its pioneer hospice program to care for the dying. Hundreds of hospices were founded around the country, most of them funded by Medicare which included nurses, social workers and devoted volunteers who became the providers of palliative care for the dying.

Private insurers followed with coverage of hospice services, but private insurance carried heavy premiums; Medicare covered 100 percent of hospice costs.

I watched how it worked for a close relative who was dying of lung cancer and his family. Hospice supplied the hospital bed set up in the home. Hospice supplied the drugs he needed for pain as well as the care to keep him clean and comfortable. And hospice helped with bereavement counseling for his wife and son.

Then, as now, he was admitted to hospice because his doctor attested that he had less than six months to live. He died three months after his diagnosis. But remember the columnist Art Buchwald who cheated death and remained in hospice care for much longer than six months?

Because such predictions are more and more uncertain as treatment options have become available, the courts forced a change in Medicare regulations. A person could not be discharged from hospice because he lived longer than six months; the six months could be renewed indefinitely.

Since 2007, Congress and Medicare have realized that with medical advances such as the CT-Scan, PET-Scan, open heart and by-pass surgery, radiation and chemotherapy, Medicare could not insist that hospice patients cannot take advantage of these possibilities while fighting his or her disease. Medicare and private insurers adopted an “open access” policy, admitting into hospice – for curative and/or palliative treatment, as long as a doctor said they had no more than six months to live.

Thus hospice has become a comprehensive health care program for the seriously ill, who may or may not be close to death. Indeed, as I have learned, it is not at all rare that a beneficiary can get well enough to graduate from hospice. My hospice expects me to be one of those beneficiaries.

In the meantime, hospice assigns to a beneficiary a nurse who comes by your home regularly to check your vital signs, see how you’re doing and help with chronic or even acute medical problems. Even more important, the assigned nurse or another nurse is on call 24/7. That means that if there is an emergency, such as a urinary problems, or the side effects of the chemotherapy, you need not go to the emergency room.

I’ve learned that the hospice nurse on call is equipped and trained to deal with such problems. No longer do I need to call 911 on a weekend and go to an emergency room. Besides being traumatic and tiring, it would cost Medicare hundreds, even thousands of dollars.

Similarly, while a hospice beneficiary may keep routine appointments with doctors, hospice nurses are equipped to deal with colds, the flu and other ailments that would ordinarily send you to a physician at Medicare’ expense. And hospice will help a patient’s oncologist by drawing blood often to keep track of possible problems such as a drop in the red or white cell counts or potassium and iron levels.

Thus hospice becomes your caregiver in fighting the disease as well as preparing for the worst. Medicare hospice, for example, supplies beneficiaries with kits that include morphine and other powerful painkillers; I’ve put my kit away and have almost forgotten about it. The best option is to avoid hospitalization for your illness for Medicare requires that hospital patients forgo curative treatment.

In addition, Medicare hospice assigns to beneficiaries a licensed, professional social worker to help family caregivers with advice, counseling and resources to help patients and families cope with the stresses of life-threatening and debilitating illness. Hospice may supply a hospital-style bed with linens or oxygen, or an IV to prevent dehydration.

The recently passed health reforms expanded curative and palliative hospice care for children in Medicaid or the Children’s Health Insurance Program (CHIP). It allows children enrolled in either program to receive hospice services without forgoing curative treatment. The Centers for Medicare and Medicaid Services (CMS) are expected to require states to comply with the changes, which are to take effect in 2013.

Finally, as of next January 1, the reforms will require that a nurse practitioner or doctor must have a face-to-face encounter with the patient at the end of the six month period to recertify his/her eligibility.

You can read or download and print [pdf] Medicare’s 16-page booklet on its hospice services, including where to find a hospice near you.

Write to saulfriedman@comcast.net

TIME GOES BY | GRAY MATTERS: Hospice

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Legal Guide for the Seriously Ill

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The American Bar Association Commission on Law and Aging has produced for the National Hospice and Palliative Care Organization a very useful guide targeted to the seriously ill and their families that outlines "7 Key Steps to Get Your Affairs in Order."
Read/Download Document

S. 1773: A bill to amend title XVIII of the Social Security Act to provide for coverage of comprehensive... (GovTrack.us)

A bill to amend title XVIII of the Social Security Act to provide for coverage of comprehensive cancer care planning under the Medicare Program and to improve the care furnished to individuals diagnosed with cancer by establishing a Medicare hospice care demonstration program and grant programs for cancer palliative care and symptom management programs, provider education, and related research.

Sponsor: Sen. Mary Landrieu [D-LA]
Cosponsors:

Text

Status:
Introduced Oct 13, 2009
Referred to Committee on Finance

Updated Information

New Guidelines for Incorporating Spirituality in End-of-Life Care

Guidelines derived from a recent Consensus Conference, including recommendations on the role of healthcare providers in the assurance of quality spiritual care to patients in a palliative care setting, are published in a comprehensive report in Journal of Palliative Medicine, a peer-reviewed publication from Mary Ann Liebert, Inc. (www.liebertpub.com). Journal of Palliative Medicine is the official journal of the Center to Advance Palliative Care (CAPC) and an official journal of the Hospice and Palliative Nurses Association (HPNA). The article is available free online at www.liebertpub.com/jpm

The article, “Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference,” represents the final Consensus Report of a conference sponsored by the Archstone Foundation of Long Beach, CA. According to Joseph F. Prevratil, JD, President and CEO, “The report’s recommendations seek to ensure that spiritual care is a fundamental component of quality palliative care, which strives to prevent and relieve suffering for seriously ill patients and their families.”

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Australian Ageing Agenda: Aged Care and Retirement Industry News and Issues - Focus on palliative care in aged care

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excerpts:
NSW’s first academic chair in palliative care will focus on improving the quality of care delivered to the residents of aged care facilities at the end of their lives.

Professor Jane Phillips has been announced as the state’s inaugural top palliative care researcher in a move that acknowledges growing concerns about the care given to people with terminal illnesses.
......
The centre plans to create a multidisciplinary research team that will draw on the experience of palliative care patients and their families to improve the quality of care.
......
Professor Phillips will also look specifically at the needs of the people caring for family members at the end stage of life.

Her research will investigate the types of support services that are needed.
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Medicare Hospice Care: Services Provided to Beneficiaries Residing in Nursing Homes

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In 2006, 31 percent of Medicare hospice beneficiaries resided in nursing
facilities. Medicare paid $2.59 billion for their hospice care, at an
average of $960 per week for each beneficiary. Hospices most commonly
provided nursing, home health aide, and medical social services. They
furnished an average of 4.2 visits per week per beneficiary for these
three services combined. They also commonly provided drugs.

The Medicare hospice benefit allows a beneficiary with a terminal
illness to forgo curative treatment for the illness and instead receive
palliative care, which is the relief of pain and other uncomfortable
symptoms. Medicare spending on hospice care and the number of
beneficiaries receiving it have increased significantly in recent years.
Previous Office of Inspector General (OIG) work has raised questions
about the hospice benefit for nursing facility residents. However,
little subsequent research has been done to examine hospice care for
these beneficiaries and almost no beneficiary-specific data exist.

This memorandum report found that hospices provided nursing services to
beneficiaries for 96 percent of claims, home health aide services for 73
percent of claims, and medical social services for 68 percent of claims.
Drugs were provided to beneficiaries for 96 percent of claims. In
addition, nursing services were provided at an average of 1.7 times per
week, home health aide services at an average of 2.2 times per week, and
medical social services at an average of 1.7 times per month.

This memorandum report is one in a series of four reports prepared by
OIG that examine the hospice benefit for nursing facility residents. It
is based on data from a medical record review of a stratified random
sample of hospice claims for beneficiaries in nursing facilities in
2006. The report also uses claims data for all Medicare beneficiaries
who received hospice care in 2006.

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Health Affairs Blog-Fact or Fiction Advance Care Planning in Health Reform

by Chris Fleming

Patients with serious or advanced illnesses would be given more control over their care by language in health reform legislation passed by three House committees that would pay physicians, nurse practitioners, and other providers for counseling Medicare beneficiaries about advance planning for future care decisions.

That was the unanimous opinion expressed by three respected geriatricians at a August 20 conference intended to clarify several issues at the heart of the current health reform debate. The conference, Fact vs. Fiction: Key Issues in Health Reform, was sponsored by Health Affairs. The participants in the panel dealing with end of life issues were Christine Cassel, MD, President, American Board of Internal Medicine; Diane E. Meier, MD, Director, Center to Advance Palliative Care, Mount Sinai School of Medicine; and Jerald Winakur, MD, of the Center for Medical Humanities and Ethics at the University of Texas Health Science Center and author of “What Are We Going To Do With Dad?,” a Health Affairs 2005 Narrative Matters essay.

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