Mourning Randy Pausch on the Internet

Wired.com published an article about how people mourn in the Internet age, specifically in the recent death of Randy Pausch, whose "Last Lecture" video has been viewed by millions. Alexis Madrigal refers to the outpouring of blog posts and comments posted to online obituaries as a new form of grieving, a distributed funeral.

It dawned on me that I was witnessing a new form of grieving: the distributed funeral.

Why watch the service on TV when you can comment on the obituaries themselves? As my friend and Dwell magazine editor Aaron Britt put it Saturday, "the internet is an open letter to everyone," and people began using any form text box on any webpage, related or not to the Pausch family itself, to make known their sadness.

At some level, these comments are a bit crazy. It wouldn't make sense in any other context to write or say what people are writing in the comments sections of blogs across the country. You can't imagine telling someone about Randy Pausch's death and them saying to you, "I am real sorry for your loss Jai," because you are not, in fact, Jai.

But given the searchability of the internet, this behavior isn't that nuts. It doesn't actually matter what URL you put your condolences on, it's all part of Googleverse, so Jai could find it if she wanted to find it.

He also compares this phenomenon to other displays of public grieving that have had for celebrities and public figures.

The mourning also mimics the way that people experience Pausch's powerful oration. You interacted with Randy through a little box embedded in a webpage. Your headphones piped his voice clear and strong into the center of your brain, almost as if some deep part of your own mind was delivering his nuggets of wisdom. He was talking to you alone, not the hundreds packed into a theater or your family gathered around the television. In response, then, it made sense to get personal and say, directly, "Thanks, Randy. We'll miss you."

This mourning splits the difference between the small and generally private funerals of our friends and family and the public spectacles that marked the passings of Stalin, or Elvis, or Princess Di. Millions of people grieved alone in the asynchronous communities of the internet.

Still, at whatever scale and medium chosen, all these death rituals retain their universal purpose. They all provide convincing evidence that though the star may die, the universe continues. Though the Marine is gone, the corps lives on.

The news of Pausch's death brought me a moment of pause. My thoughts have been with his wife, Jai, and their three children. In May I had a brief encounter with Jai at a park near their home. My family was taking a long drive from Pennsylvania to the Outer Banks when we stopped to let the kids stretch their legs. I thought she looked familiar as our children played near one another, but my suspicions were confirmed when I heard her telling her son that 'Grandma Pausch' was on a bench nearby. We exchanged a few words about the challenges of keeping track of all your children when one needs to use the restroom. I quietly told her she was an inspiration when I thought her kids would not hear the conversation. It was nothing really, a simple moment. I do not know the Pausch family, but I guess this is my moment of public mourning. My deepest sympathy to the Pausch family. I am sorry for your loss. I am inspired by your courage.

Book Excerpt: Physician Ethics in End-of-Life Care

The Oxford University Press blog is posting excerpts from the book, The Ethics of Surgical Practice: Cases, Dilemmas, and Resolutions. Last week's excerpt dealt with a case where an elderly patient's family has requested that the physician withhold information on the progression of his cancer. The authors discuss the various options available to the surgeon and the ethical obligations.

You have excised a pancreatic adenocarcinoma from your respected college biology professor, who is now retired and widowed at age 85. He returns for follow-up examination after 9 months. Laboratory tests and imaging confirm recurrence of the tumor, with widespread metastases. He is being treated by a psychiatrist for depression and mild dementia, but remains legally competent and maintains his own home. His three adult children, two sons and a daughter, are ardent in their request that you withhold the bad news from the patient. Radiation and chemotherapy are marginally indicated for palliation, but he will probably consent to the therapy if you refer him. The patient hasn’t asked you for results of the diagnostic tests. What should you do?

(A) Respect the family’s request. Don’t volunteer the information about prognosis, and refer for palliation.

(B) Ignore the family’s request. Tactfully tell the patient that his cancer has recurred, and seek his consent for aggressive treatment.

(C) Tell the patient only if he specifically asks about his prognosis and recommend palliative therapy.

(D) Dissemble and minimize the seriousness, even if he asks. Tell him that
some other doctors are going to mop up the remaining cancer cells.

(E) Tell the patient the truth. Provide him with appropriate referrals.

End-of-Life Planning More Likely After Discussing Wishes

Researchers at the San Francisco VA Medical Center say that patients who discuss their wishes for end-of-life care are more likely to complete advance directives. The study authors say these discussions should be encouraged and recommend considering "making oral advance directives discussed with physicians legally binding in all states, since many more people talk about end-of-life care with their physicians than spell out their wishes in written form. In most states, only written advance directives have legal standing."

The study, published in the June 2008 issue of the Journal of the American Geriatrics Society, looked at 173 patients at San Francisco General Hospital who had participated in a previous study comparing preferences for different types of advance directive forms. Six months after that study, the authors asked the participants if they had made plans for their own end-of-life care.

They found that 60 percent of the participants had thought about their wishes for their own advanced care planning, 54 percent had talked about it with family and friends, 21 percent had talked with their physicians, and 10 percent had filled out advance directives.

Analyzing the results further, the authors found that the participants who had discussed advance care planning with family and friends were 12 times more likely to subsequently have discussed it with their physicians and four times more likely to have filled out an advance directive than those who had not.

Vigil Companion Programs - So No One Dies Alone

Vince Chiles

As a hospice social worker and supervisor, I have witnessed the myriad of family dynamics played out at the end of life. The love, the sadness, and the struggle for acceptance of an approaching death is seen through the relationship between husbands and wives, brothers and sisters, parents and their children. And then, there are those who outlive their support systems. They often find their way onto hospital wards in the last days or hours of life, and are literally all alone. Some may muster a request for companionship in the last moments of life from a nurse, who due to the constraints of her patient load, can only stay a moment or two before rustling off.

Such was the experience of Sandra Clarke, a critical care nurse at the Sacred Heart Medical Center in Eugene, Oregon. Ms. Clarke was asked to stay by a dying patient. She had to finish her other duties, and when she returned her patient had died. Troubled by this lonely passing Clarke was inspired to start ‘No One Dies Alone,’ a vigil volunteer program that provides companionship to those who have no one in the last moments of life.

Hospice volunteer programs have been providing vigil companions to their patients for decades in the absence of families when commitments or distance keep them away. But for hospice to occur the patient or a surrogate has to consent to the care. These faculties or resources are not always available to patients, who either through longevity of life, estrangement, or distance, have no one. Some of our most frail fellows are completely alone. That’s where programs like Sacred Heart’s ‘No One Dies Alone’ and other vigil companion services come in. They are volunteer programs that are often run by medical facilities whose mission it is to provide a compassionate presence to those who have ‘No One.’

The philosophy of the vigil companion programs is to provide an empathetic witness to the transition that occurs with death. They assert that because no one comes into life alone in the best of situations, no one should leave alone either. As a result of this care philosophy volunteers are available around the clock to sit with those who need this desperate company whenever necessary. Nurses are the eyes and ears of these services, identifying the need through their clinical insight and intuition. They notify the coordinators who in turn alert the volunteers of their duty. Volunteers may sit in silent reflection, play soft music, or provide a gentle touch of comfort. They are trained to alert the medical staff of any problems or concerns that might arise. The service may lesson the effects of complicated grief for distant family members or staff. Overall, vigil companion services reinforce the patient’s dignity and worth of companionship in this most vulnerable time. When provided well these services assure ‘No One Dies Alone.’

Reference: No One Dies Alone, Sandra Clarke, CCRN; Summer 2002 (Vol 8, No.3) Supportive Voice, the official newsletter of Supportive Care of the Dying: A Coalition of Compassionate Care.

Vince Chiles, MSW

Round-Up: Physicians Handling End-of-Life, Caregiving Talks, Photo Essays, Scholarships and Awards

I have so much crowding my inbox this will be a big list:

• Most weeks the New York Times Health Section features cases from different doctors. This one from Dr. Jessica L. Israel, chief of geriatrics and palliative medicine at Monmouth Medical Center, urges doctors to slow down to contemplate the moment, whether its to witness a patient's death, or to receive a patient's appreciation.
  

  It’s Monday morning and I meet my new medical student, Nelson, on the hospice unit. I am there to sign a death certificate for a man who died the night before. Nelson is flipping through the patient’s chart, and he asks me, “What are we going to do for this patient today?”
  
  I wonder if he’s kidding, and I say: “Nothing. He’s dead.” Later, recalling this conversation, I still cannot believe I said it so matter-of-factly.
  
  Nelson is still holding the chart and I think I see his hands shake.
  
  “Hey, are you O.K.?” I ask. “You do know what you signed up for, don’t you? It is a palliative-care and hospice elective. People are going to die every day.”
  
  “I know, I know,” he says. “I’ve just never been near anyone who has died before.” Then he says, “Wow, it’s really a big deal.” And he sits down — because he needs to, I think; he needs to respect the moment.
  
  In this moment I learn something from Nelson, a lesson I thought I already knew. I learn to slow down, to feel the gravity of the moment, the power of time and the depth of this important work. Nelson is right. It is a big deal.

• On a similar vein, the Washington Post and Newsweek's On Faith column featured an essay from Ismael Gama, Associate Vice President of Spiritual Care and Mission Integration for Adventist HealthCare. Gama speaks about the need of all members of a health care team to understand the whole patient.
  

  In the 1920s, Anton Boisen, a pioneer in hospital chaplaincy and CPE [clinical pastoral education] , was the first to coin the term living human document in reference to the understanding of a patient’s theological needs. The living human document has since evolved to become a catch-all term in regards to understanding the theological, psychological and social needs of patients.
  
  . . .
  
  Our ability to apply this knowledge in health care, however, is largely dependent on our ability to get to the heart of an individual’s story. While CPE students are already engaged in this discussion as part of their training, we need to engage all members of the health care team in this dialogue because there are lessons in the living human document that can improve the delivery of quality, compassionate care.

• Another New York Times article that got us talking is this one about the rise in medical procedures being performed on the very old, in this case a pacemaker and defibrillator implanted in a 99 year old woman.
  

  Dr. David Goodman, a co-author of the Dartmouth Atlas of Health Care, which has studied the last two years of life, said there is much research suggesting that most aggressive treatment of late-stage chronic diseases does not actually prolong life and can actually decrease its quality. Of Mrs. Homer, Dr. Goodman said, “the odds are that she’s really an amazing exception.”
  
  “The question is not a relatively healthy, smart, sensible 99-year-old getting a life-prolonging procedure, one that prolongs the quality of life,” Dr. Goodman added. “The question becomes the 82-year-old with dementia who has cancer or congestive heart failure.”
  
  . . .
  
  But Dr. Tom Perls, founding director of the New England Centenarian Study at Boston University Medical Center, said that people who reach 100 “have demonstrated a survival prowess.”
  
  “It’s much more the case of the older you get, the healthier you’ve been,” Dr. Perls said. “In my experience, when they’re completely cognitively intact, you cannot in any way or form predict their mortality.”

• Look at Philip Toledano’s photo essay, Days With My Father. At 98, his father suffers from dementia and other health problems. Toledano's photographs chronicle his caregiving journey in a powerful way. (Thanks to The Future of Aging Blog for sharing.)

• Listen to Carol Levine on NPR's Fresh Air radio program. Levine, a home healthcare advocate, cared for her husband for 17 years, who was seriously injured in a car accident in 1990, until he died in 2007. Levine also served on the panel for HFA's 2001 teleconference on Caregiving and Loss.

• Watch this interview of Linda Edmondson, co-chair of the Attorney General's Task Force to Improve End of Life Care in Oklahoma and a member of the Governor's Hospice Advisory Board.

• View the winners of the National Family Caregiving Awards, sponsored by the National Alliance for Caregiving with support from MetLife Foundation.

• There's a caregiving scholarship available through the Rosalynn Carter Institute for Caregiving. The Mattie J. T. Stepanek Caregiving Scholarship provides financial assistance to family, professional, or paraprofessional caregivers of any age who are seeking training or education in specific skills, procedures and strategies that lead to more effective care at the same time that they serve to protect the health and well-being of the caregiver. Four $2,000 scholarships will be awarded. Deadline for application is September 15, 2008.

Media Coverage of Hastened Death Provokes Discussion

We hesitate to post articles on subjects variously covered as euthanasia, ‘physician-assisted suicide’, ‘hastened death’, ‘death with dignity’ and other related subjects. Besides the obvious controversy, it doesn’t really touch on our primary concerns as hospice professionals. At HFA, we are concerned about educating the public about the benefits of hospice care, and educating hospice providers in their mission to improve the quality of life of a patient with a terminal illness. Hospice care neither prolongs life nor hastens death. Hospice care offers pain relief and control, comfort and dignity to the dying. At HFA, we believe that good hospice and palliative care can prevent a desire to hasten death.

However, sometimes we make an exception to our hesitation to cover these issues and Christian Sinclair, MD, who writes for the palliative care blog, Pallimed, has given us a reason to do so. Sinclair posted an international review of recent ‘hastened death’ cases that we did want to share, because Sinclair sums up the significance of these cases to hospice and palliative care providers so well:

So why is this all important to palliative care?
Because guess who thinks about these things:

• your patients
• their families
• medical professionals who consult you
  
• the public

and they may never bring it up with you for a multitude of reasons. Or they may hint at hastened death, but never start an open discussion. Or they may make a sly joke about it, waiting to see how you respond. Or they may assume what is good standard palliative care is really euthanasia.

Good hospice and palliative care practices can help people discover hastened death does not have to be the easy way out. If the lines are too blurred between the legal and illegal our field has significant trust to lose with the public and our peers. Being educated and aware of the public debate over hastened death is a responsibility for palliative medicine to ensure the safe, ethical, and legal care of the patients and families entrusted to us.

He ends the post with his “standard disclaimer” - Pallimed, Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine. Links do not represent endorsement – which makes a pretty good disclaimer for the Hospice and Caregiving blog, too.

Participants Needed For Caregiver Support Research Study

The Caregiver Support research study seeks participants to help test an online program designed to help caregivers provide assistance to an aging loved one. Participants can receive up to $275 for filling out four online surveys and trying out a new caregiver support website before August 18, 2008.

To qualify, participants must be providing caregiving support to an aging loved one who needs assistance with at least one activity of daily living (i.e. eating, bathing, etc.) and participants must have an email address and a computer with a high-speed Internet connection.

This study is being conducted by the Oregon Center for Applied Science, Inc. by a grant from the National Institute on Aging.

Research Shows Neurobiological Underpinnings of Complicated Grief

The October/November issue of Scientific American Mind will contain an article about new research into the underpinnings of complicated grief, which is described as when the painful emotions associated with grief are so severe and prolonged they interfere with a person's ability to accept the death and resume their own life. This may occur in 10 to 20 percent of the bereaved.

. . .researchers have come a step closer to elucidating the neurobiological underpinnings of this condition called complicated grief (CG). A new functional magnetic resonance imaging (fMRI) study, published online in May in the journal NeuroImage, shows that in CG patients reminders of the deceased activate a brain area associated with reward processing, pleasure and addiction.

A team led by Mary-Frances O’Connor of the University of California, Los Angeles, studied 23 women—11 of whom suffered from CG—who had lost a mother or sister to breast cancer in the past five years. While in the scanner, the women saw pictures and words that reminded them of their loved one. Brain networks associated with social pain became activated in all women, but in the CG patients reminders of the deceased also excited the nucleus accumbens, a forebrain area most commonly associated with reward.

O’Connor believes this continued neural reward activity probably interferes with adaptation to the new situation. “When we see a loved one or reminders of a loved one, we are cued to enjoy that experience,” she says. “But when a loved one dies, our brains have to adapt to the idea that these cues no longer predict this rewarding experience.” Scientists do not yet know why some people adapt better than others do.

O’Connor hopes the findings will lead to new treatment strategies that will “help the brains and minds of CG patients understand that the person is gone.”

HFA discussed the implications of classifying complicated grief as a mental disorder in the DSM-V in its 2007 book, Living With Grief: Before and After the Death.

AMA Discusses Changes in Store for Hospice Physicians Under New Medicare Guidelines

The AMA's newspaper, American Medical News, examined the new Conditions of Participation for hospices participating in Medicare and discussed how the new rules may change the role of hospice physicians.

For physicians who practice in the hospice and palliative care setting, the changes likely will not drastically change the way they go about treating patients, said Porter S. Storey, MD. He's a hospital-based palliative care specialist in Boulder, Colo., and the American Academy of Hospice and Palliative Medicine's executive vice president. CMS acknowledged, for instance, that many hospice patients are already very involved in their treatment plans.

Although the changes are not revolutionary, they are evolutionary for the physicians involved in end-of-life care, and this evolution has already started, Dr. Storey said.

"They clearly intend for hospice physicians to be much more involved in the care of patients," he said. "In the past it was possible for a small hospice to just employ a doctor to come by once a week and sign papers. Those days are really over."

For example, Medicare will require, for the first time, that hospices develop quality-assessment and performance-improvement programs and that their physicians participate in the process. Most physicians will welcome this opportunity to become more involved in improving outcomes, Dr. Storey said.

Read more about the changes the new Conditions of Participation will entail for hospices here.

Strain of Caregiving Considerable When Caregiver is Also a Single Parent

This article from The Journal News (NY) profiles one single mother's struggle to provide care for her mother.

Catherine Wilson sits down to work as a bookkeeper every night at 9, after her 80-year-old mother has settled into bed. She does her grocery shopping after midnight, no longer surprised to see others in the aisles at 2 a.m.

A 50-year-old mother of two teenagers, Wilson says she can instantly spot her fellow "caregivers," as they are known in the social-service pamphlets. They are struggling to meet the needs of an elder at home - medical appointments, prescriptions, and mental confusion, in her mother's case - while raising kids and trying to hold down a job.

"I've had unbelievable conversations in supermarkets," she said. "We have children, we have households, we have work responsibilities. We're still paying mortgages, and we're faced with a situation where we have to quit work."

The article features video of Wilson and her mother that illustrates the story. Thanks to Aging Parents Authority for sharing.

Idaho Improves Community and Home Based Care for State's Residents

Nice post from Joanne Kenen at The New Health Dialog Blog about Idaho's innovation in home based and community care.

Even Leslie Clement, Idaho's Medicaid Administrator, admitted that Idaho isn't usually regarded as a hotbed of social innovation, but the AARP was impressed enough with the state's achievements on keeping people out of nursing homes to make Clement one of the featured speakers at a recent luncheon and discussion on long-term care entitled "A Balancing Act: State Long-Term Care Reform." With good reason.

Most of us don't' want to end up in nursing homes. Too often, we don't have an alternative. Many states, Idaho among them, have been exploring ways to provide more home and community-based care. It's cheaper. And people prefer it.

Does Assisted Living Include Caregiving?

This post from caregiverslist.com discusses the variation in services offered by assisted living facilities. If you are researchers assisted living for a family member, you will want to ask about what eldercare services are offered, whether nursing care is available and for what cost, and whether the center can provide continuity of care at the same location.

Finding the right Assisted Living Community presents a complicated task because of all these dynamics. In addition, another type of assisted living is called "continuing care" and available at Continuing Care Retirement Communities. These communities usually require a large initial deposit (some seniors sell their home and use the proceeds to pay for this deposit) but guarantee the senior will be able to remain in the community as their care needs may change. Usually condos or townhouses, apartments and nursing centers are all located on the campus and the senior may move between them, as needed.

England's National Health Service Announces New End of Life Care Strategy

The National Health Service (NHS) in England announced a 300 million pound investment in end-of-life care on Wednesday, aimed at allowing more people to choose to die at home.

Currently, most of the 500,000 people who die each year in England do so in a hospital, despite surveys that show two-thirds would prefer to die at home with their families. There was extensive coverage of the new program in the British media, a sampling:

• Here are brief reports of the announcement from Reuters UK and OnMedica.


• The TimesOnline featured several articles and commentary. This article lists the key facts of the initiative. Here is a commentary that questions the desirability of dying at home. This commentary praises hospice, but worries whether the NHS can live up to the promises of the program. This writer suggest that the English discuss death more openly, in order to celebrate life.


• The BBC reported that Health Secretary Alan Johnson wants to start a national debate to get people talking about death.
  

  The strategy suggested a number of ways to encourage that, including getting funeral directors to hold open days and schools to start discussing it with pupils.
  
  Paul Cann, from Help the Aged, said: "For far too long, there has been a presumption that death should be at the convenience of the system, as opposed to respecting the individual wishes of those who are approaching their final days."
  
  But he added the challenge now was to turn "fine words into action".
  
  And shadow health minister Stephen O'Brien said the government had ignored the "wonderful contribution" made by hospices.

  
  

PBS Examines End-of-Life Discussions with Oncologists

Last month we posted a study that was reported at the American Society of Clinical Oncologists showing only one-third of cancer patients recalled discussing the end of life with their oncologist. Last week PBS' NewsHour with Jim Lehrer interviewed a cancer patient and physicians about why having these discussions can be so difficult for doctors.

Near the end of the segment, a patient whose doctor was not comfortable having this type of conversation explained why to the patient's palliative care doctor.

DR. DIANE MEIER: When I asked him about her treatment options and the pros and cons of the different treatment options, one of the treatments that he had suggested to her when I asked him about it, he said he didn't really think it would help her.

And I said, "You know, do we still want to offer her something that isn't really going to help her and might carry consequences or side effects?" And he said, "I don't want Judy to think I'm giving up on her."

And I thought that captured it perfectly, that here was a physician who cared so deeply about his patient that he wanted to convey to her his commitment to her, that he was not going to abandon her no matter what. The way he thought he had to do that was by offering treatments, regardless of how likely they were to benefit, in a way.

In addition, Dr. Barron Lerner, a professor of medicine and public health at Columbia University Medical Center in New York, describes why doctors can have difficulty in shifting the focus from treatment of the disease to provide palliation.

DR. BARRON LERNER: They feel that it's almost wrong to have that sort of discussion, that giving up is equivalent to doing something bad. And we're really not giving up here.

We're just shifting from aggressive treatment to try to kill sick cancer cells to aggressive palliation, where we're going to do as much as we can to prolong life for as long as possible and to keep the person as comfortable as possible.

Bringing Home Mom and Dad

Newsweek prints a weekly "My Turn" essay from a reader. The July 21 edition is from Anne Kennedy Rickover, who writes about the decision she and her parents made to have them move closer to her home as they began to have more difficulty managing their daily activities. She describes the decision to ask her parents to move to her hometown as similar to the decision to have a child, requiring planning for a life-altering event.

I hadn't been pregnant in 20 years, but this was planned just as my previous pregnancies had been. For no logical reason, I woke up one day and knew that it was correct; my entire being knew it was precisely the right time. Of course, the clarity was subtly infiltrated with uncertainties and fears as soon as the decision was made.

When I woke up that morning a little more than a year ago, I knew it was time to ask my parents to move closer to me. By closer, I mean 1,300 miles closer—all the way from suburban Philadelphia to Lincoln, Neb. The logistics, both geographically and culturally, were overwhelming. The distance between the East Coast and the Midwest had never seemed so vast.

Preliminary Long-Term Care Opinion Leader Survey Results

The Commonwealth Fund and Brown University conducted a survey of long-term care leaders. Over 1100 respondents, including consumer advocates, providers, public officials, and policy experts, completed the survey between September 2007 and March 2008. The research objectives were described as:

• Assess the views of long-term care opinion leaders with regard to the current state of long-term care in the United States, the attributes of an ideal long-term care system, and potential areas and strategies for reform;


• Identify areas of agreement and disagreement about the nature of the long-term care problem across opinion leader type;


• Compare the views of national, state, private sector and research based long-term care opinion leaders vis-à-vis the character of suggested strategies for reform;


• Learn about the networks of long-term care opinion leaders and how knowledge and views regarding important long-term care issues diffuse among them;


• Compare views of long-term care opinion leaders to those of other health care opinion leaders and the general public that have emerged from previous surveys.

Among the findings, eighty-five percent ranked the workplace as one of the top three challenges facing long-term care, followed by financing (66%) and achieving quality (60%). More ranked nursing homes as fair or poor (53%) than other service types, including hospices (6%). They favored adopting savings incentives and adding a long-term care benefit to Medicare. Few had faith in consumer report cards to help people make informed choices. Read more by downloading the top-level findings.

Hospice Use in Maine Growing

The Bangor Daily News writes about hospice use in Maine, which ranks among the lowest in the nation. Reporter Meg Kelly tells the story of two patients in the service of New Hope Hospice, Dwight Smith, 75, who has lung cancer, diabetes and other conditions, and Dr. Robert Weiss, 90, who is dying from pulmonary hypertension. Weiss is pleased with the care he is receiving:

Every weekday morning a certified personal care provider from New Hope Hospice comes to visit Weiss. She helps him shower and dress, fixes his breakfast and cleans up the kitchen, makes his bed and tidies the bathroom. She leaves a light lunch in the refrigerator when she goes.

Once or twice a week, a registered nurse comes by — often it’s Valerie McDougal, the same nurse who checks up on Dwight Smith.

"I told her I was getting a sore on my right hip from sleeping on that side all the time," Weiss recalled. "She picked up the phone and that afternoon I had a new foam mattress. I’ve slept comfortably ever since."

He finds that degree of attention and responsiveness reassuring, and knows that as his disease progresses, the level of support from the hospice agency will keep pace.

"There’s a nurse on call 24 hours a day who will come here if I need her. She won’t tell me to call 911 and go to the hospital," Weiss said. "There is nothing I need they won’t get. I’ve never had more caring service."

Kelly reports that hospice use in Maine is growing, despite its low level of use compared to other states.

Maine is one of just a handful of states to require private insurers to include hospice care among the benefits they provide, thanks to 2001 legislation that also increased Medicaid funding for hospice and paved the way for the building of Maine’s lone residential hospice facility, which is located in Scarborough.

Hospital Ethics Teams Raise Concerns

On June 25 The Wall Street Journal published an article about the increase of ethics consulting services at hospitals and the qualifications of those professionals to deal with care issues at the end of life.

. . . The complex ethical issues arising from new life-prolonging medical technologies are throwing up new challenges. And hospitals face potential legal liability if patients and families feel they haven't been properly counseled or provided with all the information they need to make decisions.

"Hospitals would never permit staff to engage in medical procedures for which they are untutored, untrained and unsupervised, but there are less-than-qualified persons intervening in serious ways in the lives of patients and families" on medical ethical issues, says Nancy Dubler, director of the bioethics program at Montefiore Medical Center in the Bronx, N.Y.

The article was discussed on the Quality of Life Care blog, which offered a different solution to assist families dealing with these difficult decisions - call your local hospice. Deanna Cochran, RN, BA, CHPN writes:

The article discusses how ethical committees and consultants in hospitals are being criticized for not being trained enough to talk with families regarding end of life issues. When I read this article, what I thought about is that hospice team members have these talks daily in their practice as a matter of course. We are part of family meetings where all kinds of difficult and emotional topics are discussed.

I’m not a trained ethicist or counselor. Neither are hospice nurses, doctors, social workers or chaplains who deal in this level of care daily. What we do know is end of life issues and how the body works at the end of life and we do have the time to talk about all of it. Time to educate is built into the system of palliative care.

Study Examines Emotional Toll of Stillbirths and Infant Deaths on Obstetricians

The July issue of Obstetrics & Gynecology included a University of Michigan Health System survey on the emotional toll of stillbirths and infant deaths. Of the 804 obstetricians who responded, three-quarters said the deaths took a large emotional toll on them personally, and nearly one in 10 considered giving up their practice.

"Our survey reveals that perinatal death has a profound effect on obstetricians, and 8 percent had considered giving up obstetrics because of the emotional difficulty of caring for patients with perinatal death," says lead author Katherine Gold, M.D., MSW, of U-M's Department of Family Medicine and Department of Obstetrics and Gynecology.

"We know that stillbirth and infant death are traumatic events for families; this study suggests that they are also traumatic for the physician."

. . .

Two-thirds of physicians supported training by formal presentations or seminars, and nearly half recommended informal gatherings for physicians to discuss difficult experiences. Many respondents suggested that a meeting with bereaved parents could serve as a useful training strategy as well as a way of helping physicians cope with their own feelings about the loss.

Op-Ed on Long-Term Care Argues for an Advocate

Steve Jacob of the Star-Telegram (TX) wrote an op-ed piece at the end of June dealing with hurdles of providing long-term care for the elderly. Jacob includes figures from a number of recent studies and surveys to show the current state of long-term care in the United States. He discusses the challenges we need to face in order to improve long-term care options.

Long-term care (LTC) has few champions. David Stevenson, a Harvard Medical School professor, noted in a recent edition of the New England Journal of Medicine, that healthcare was mentioned more than 1,000 times during the 35 Democratic and Republican debates during the primaries. But almost nothing has been said about LTC, despite the fact that it comprises about 10 percent of healthcare spending.

LTC is more about social functioning than managing disease. The estimated 9.5 million Americans who require LTC need assistance with at least one activity of daily living (bathing, dressing, eating, toilet use and moving from one room to another) or instrumental activities of daily living (meal preparation, money and medication management, telephone use, light housework and food shopping).

Most LTC services are provided by relatively low-paid trained staff rather than physicians or registered nurses. It’s an intensely personal service, traditionally designed to keep people safe, clean and well-fed. The trend is toward maximizing patient self-sufficiency and independence.

Jacob makes a plea for greater government attention for long-term care solutions, concluding that ". . .along with Social Security and Medicare, long-term care is the third leg on the retirement security stool. It desperately needs a champion."

Swedish Study Shows Many are Not Told Spouse is Dying

From TIME Magazine, a Swedish study of nearly 700 men whose wives died from breast, ovarian, or colon cancer in 2000 or 2001 showed 40% were not told their wife's cancer was incurable, or were only told just before death. Eighty-five percent of study participants thought spouses should be told immediately. The research was conducted at the Karolinska Institute in Stockholm and appears in this month's Journal of Clinical Oncology.

The findings . . .suggest doctors need to do a better job at communicating the exact nature of an illness. Physicians are, after all, largely responsible for informing families when their loved one is facing a fatal disease — of those widowers who were told that their wife's cancer was incurable, 79% received the news from the doctor. Still, patients and families do control at least some of the information flow, Dahlstrand says. "Sometimes a spouse can block out what the doctor is trying to tell them," she says. "So, the doctor must be as straightforward and unambiguous as possible."

At the same time, patients must be clear with their health providers about how much information they wish to have and with whom they wish to share it. Previous studies have shown that patients often have an easier time dealing with a terminal diagnosis when accompanied by their families, but doctors in the United States, for example, are prevented by medical privacy laws from revealing health information without a patient's consent. Plus, not all families want all the information: the Swedish study showed that 15% of participants did not wish to know that their wife was near death.

The new study is part of a larger inquiry into how people prepare for the nearing death of a spouse. Very little research has been done on how communication before death affects a widow or widower's physical and mental well-being after their spouse is gone. One study, published last spring in the journal Death Studies, found that knowing ahead of time that a spouse is fatally ill may give the surviving partner an opportunity for closure and may prevent extreme depression later on. The paper warns that while most mourners eventually recover from the loss of a loved one, about 20% will face chronic emotional difficulties. Having a chance to say goodbye can mitigate those future problems. "It was less about how much was said, as long as you had the chance to say what you wanted to say," says lead author Patricia Metzger, a graduate student in psychology at the University of Wyoming. "People want that time to remind their spouse how much they love them."

Round-Up: Travel Tips, Dementia Study, Hospice Music and the Perfect Conversation

Some articles, posts, and items of interest from around the web collected from the past couple weeks:

• The Caregiving Solutions blog offers tips about traveling with elders and the disabled. Preplanning is essential to the process and wellness coach Pamela Larsen Schroeder offers some good advice caregivers should think before their trip.


• From the Changing Aging blog - "HealthPartners’ research foundation and the Center for Spirituality and Healing at the University of Minnesota are recruiting participants through the summer for a study that will seek better means of stress management for people who are caregivers to a family member with dementia. To learn more or sign up, contact Dana McGree at 952-967-5031 or dana.a.mcgree@healthpartners.com."
  


• The Boston Globe offers a review of a new release of 'hospice music':
  

  The title of classical guitarist Marcia Feldman's new CD, released June 17, is "Between the Worlds." Perhaps no idea could better sum up the unique realm that Feldman's music inhabits. She is a hospice musician - a performer who plays tunes to soothe the dying. The worlds she refers to in the CD's title are those of life and death, and her music is designed specifically to ease the transition from one to the other.
  
  It's an unusual niche, to be sure, but one in which the Dedham resident has long felt comfortable. Trained in classical guitar and jazz vocals at Berklee College of Music, Feldman first began thinking about the connection between death and music when she lost her father 20 years ago. "His situation did not involve hospice care; he died suddenly," she said. "But something about the process of grieving for him made me think increasingly about the role music plays at our most troubling times."



• This blog features posts about two family members diagnosed with cancer, the mother and brother of the writer. This post describes the conversation between the brother and his oncologist.
  

  After discussing Craig’s report, Dr. F. gently began asking Craig questions about his quality of life, including how he feels compared to six weeks ago; if he’s happy with the chemo results thus far; and if he feels satisfied with his quality of life. He asked these calmly, and in a way that shaded his own opinion from that of Craig’s. Craig answered every question, with each response growing labored from sheer exhaustion. He said that he felt more tired than six weeks ago, when he felt he was more on the mend. He seems most distressed about his fatigue, which has prevented him from doing the things he loves, like reading, writing, and playing music. He said he can muster energy to do short activities, but even those are difficult; talking has become another short activity. Still, he feels he’s satisfied with his life (so far) and would like to continue. If I know my brother, he won’t be the one to say stop.
  
  It broke my heart to hear him speak about his life, a life that was so vibrant and so full of promise just six months earlier. That he’s had to discuss his own treatment, and consider his own mortality less than one week after burying Mom seems particularly cruel. But there’s never a good time for such a discussion, and Dr. F. did it perfectly. He ended the discussion by saying that if C were to say that he no longer wanted to continue with the medicine, he would view it as a reasonable statement. He also added that he sees a lot of cancer patients, and that C seems to be fighting hard to be where he is. He noted that he had hoped C would be in a better position symptomatically, and though there’s still a chance he may turn the corner, Sorafenib hasn’t really helped C in terms of enhancing his energy.

Discussions about African-Americans and End-of-Life Decision Making

Hospices and other organizations that care for people at the end of life are gaining an increasing awareness of the need to learn more about incorporating cultural competency into their care. This month HFA's Lisa McGahey Veglahn talked to two professionals who are combining their experiences to bring a greater awareness of hospice and end-of-life issues to the African-American community in Kansas City.

Gloria Thomas Anderson, MSW, is the author of The African-American Spiritual and Ethical Guide to End of Life Care.

Jeannette Ford, Community Relations Director for Kansas City Hospice, has developed a new program utilizing Thomas Anderson's booklet.

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Interview with Gloria Thomas Anderson, MSW

Gloria Thomas Anderson, a licensed master’s degreed social worker and clinical instructor, is an African-American international author and motivational speaker. Anderson teaches cultural diversity and social work practicum integration courses, has authored three books, and presents and lectures on a wide range of social service and inspirational topics.

In the process of developing and writing The African American Spiritual and Ethical Guide to End of Life Care, Anderson became a subject-matter expert and presented her paper in 2006 to the North American International Conference on Spirituality and Social Work in Ontario, Canada.

Q. What interested you in developing this booklet?

A. I was doing a practicum at the VA Hospital as part of my Master’s program in Social Work. At the VA I worked with dialysis patients, many of whom were older and African-American. As we talked, they would often share with me their experiences with the healthcare system that had led to a feeling of mistrust.

I also was fortunate to be able to sit in on some of the ethics committee meetings at the hospital. Hearing the moral dilemmas that these families faced, along with my conversations with patients, made me realize that many of the issues in medicine are not as clear-cut as one might think.

I witnessed a scenario where a nurse, who happened to be white, was asking an older African-American woman if she had an advance directive. This nurse meant no harm; she was simply doing her job. But somewhere in the translation this woman felt that the nurse was trying to get her to go into a nursing home. In fact, the sub-title of my booklet, “What Y’all Gon’ Do With Me?” came directly from what this woman expressed to the nurse.

Later on I worked with a non-profit organization where I helped to develop a cultural competency training manual. As my interest in this issue grew, I was surprised to discover that not a lot of cultural-specific literature existed that dealt with end-of-life issues. Because I am a writer, I realized that I could combine these two passions to help meet this need. I was fortunate to have a great deal of input from a variety of professionals, including social workers, nurses, chaplains, and staff members at the Center for Practical Bioethics.

Q. Tell me more about the title and style of your booklet.

A. As I mentioned, the title came directly from an encounter that I witnessed. I also decided that I wanted to write a booklet that was not clinical, but conversational—something that my own parents would read and not put down right away because of the subject matter! I received a grant through the Women’s Council at the University of Missouri Kansas City, which provided the funding to publish the booklet. I also received travel grants from various sources to present my research at the North American Spirituality and Social Work conference in Ontario, Canada. I soon realized how much of an audience there really was for this type of culturally-sensitive information.

Currently, I am excited about collaborating with Kansas City Hospice to use my booklet as a free educational tool locally in African-American communities throughout their nine-county service area. My goal is to offer the booklet to those who can benefit most and to provide information that is helpful in planning end-of-life care. For those interested, an outreach kit will be available soon that contains the newest reprint of the booklet and other materials designed to help connect and provide services to African-American communities in their regions.

Q. Why do you think that African-Americans have traditionally not used hospice care?

A. My answer is based on research and my own observation and experience. There is limited awareness of hospice care in the African-American community, and hospice has not been actively promoted within many African-American communities. But for those families who have experienced hospice, it can be a real revelation to learn about the kind of support hospice offers not just for the dying person, but also for the caregivers.

As we discussed, for many older African-Americans, there is a general mistrust of the healthcare system. They still remember the Tuskegee experiments and the heart-breaking impact. Unfortunately in our society, especially for older African Americans, the message conveyed to many was, “Why would anyone care if I lived or died?” Because of this mistrust, some African Americans traditionally have not gone to the doctor regularly and often don’t get treated in the early stages of an illness. So when they do finally arrive at the ER or the hospital, often in the later stages of an illness, it can be a great challenge for healthcare personnel to treat them and provide the full range of services available.

One important cultural consideration in the African-American community is the issue of spirituality and faith. Many African Americans believe strongly that God will heal them. But doctors play an important role, too; in many ways, they are seen as God’s “instrument” for that healing. So when faced with making decisions about end-of-life care, there’s a spiritual component—if you decide to stop treatment, are you somehow “playing God?” This dilemma can cause a great deal of spiritual anguish to patients and their families. And I think there’s a feeling that’s universal in times of illness—I’m not going to “give in” and I’m not going to “give up.”

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Interview wih Jeannette Ford

Jeannette Ford has been Director of Community Relations at Kansas City Hospice since 1980.

Q. Traditionally, African-Americans have made up only a small percentage of those who use hospice care. Is that true in Kansas City, and what do you see as some of the reasons for that?

A. Actually, African Americans make up a larger percentage of our families at KC Hospice than the national average, although it is still a relatively low number. Culturally, many families don’t like to talk about death and dying; and by the time there is a willingness to do so, it is often too late.

Historically, there are issues of mistrust within the African-American community toward the healthcare system. Hospitals are often seen as the “Cadillac” of healthcare—that’s where one goes to get the full range of available treatment and cure. So for many, a system like hospice that has traditionally focused on care in the home is not seen as a benefit but as a deprivation.

Changes in our society and in our reimbursement system also play a role. For many families, both adult children may work outside the house, so there is not a full-time caregiver available. And ironically, in part due to advances in medicine, we are now seeing much sicker people with more complex needs. For many families, these situations can be overwhelming and caring for a family member at home is too much.

In Kansas City, we’ve been able to address some of these issues with our 24-bed inpatient facility. At the Hospice House, we have definitely cared for families here who might have otherwise died in the hospital, or would have gone home but risked a high probability of re-hospitalization.

Q. Have you actively promoted hospice care to minority populations in Kansas City?

A. Because hospice is a voluntary health care option, we always want to be sure it’s being utilized by those who really want it. We have met with families who decide that they can handle their loved one’s care without hospice, and that is fine. And particularly in the African-American community, where there has been a history of not being able to access good medical care, there are families for whom hospice limits what they perceive as their opportunity to always try one more treatment.

We always aim to provide information about hospice as an option, but because of the financial limitations of our reimbursement system, hospice may never fully meet the needs of those who want that type of “open door” system.

Q. Tell us more about working with Gloria Thomas Anderson and utilizing her booklet in your outreach efforts.

A. Gloria’s social work advisor had called me about placing another student at KC Hospice. While we were talking she mentioned Gloria’s booklet and I saw an opportunity. KCH had been looking for a way to build relationships within the African-American community in Kansas City. Basing a program around Gloria’s booklet, we’ve hired an internal coordinator and are embarking on a three-year project that we hope will allow us to demonstrate the benefits of hospice care.

In some ways the program reflects a “typical” hospice marketing plan—hold meetings about hospice care, provide booklets and build a relationship as a community resource. But we will be targeting a more specific audience, the African-American community, and so we plan to build relationships, with churches and faith communities first. For many African-Americans, the church plays a core role in their lives and in their neighborhoods.

Over the next three years, we hope to see—by demonstrating the benefits of hospice, will we make an impact and change attitudes about hospice?

Q. What about Gloria’s booklet caught your attention?

A. The booklet is written from her perspective—by someone who has lived the experience. Having watched family members struggle with the issues of end-of-life decision making, she understands the obstacles very clearly. I also appreciate how she has intertwined the issue of faith in the subject matter. I also liked how the booklet discusses not only hospice but the broader topic of Advance Directives. That will allow us to really open up our presentations to a wider range of audiences and subject matter, and help people to think about these issues long before hospice may be necessary.

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If you live in the Kansas City area and would like to receive a copy of this booklet or learn more about Kansas City Hospice's program, please contact Ms. Ford at jford@kchospice.org.

If you live outside of Kansas City, you may request a booklet by emailing Ms. Thomas Anderson at gloria@hearttones.com.

New York MOLST Forms Go Statewide

The Rochester Democrat and Chronicle reports that New York has passed a law to make its MOLST (Medical Orders for Life-Sustaining Treatment) form permanent and statewide. The form is very similar to POLST forms being used in other states, such as Oregon. The form requires a physician's signature, and "allows people to indicate whether they would want IV fluids, medications such as antibiotics, a feeding tube, a breathing tube or other interventions, and whether they want to go to a hospital. They can also specify whether they want only comfort measures or even certain treatment for a trial period."

Prior to the passage of this new law, the MOLST form had been used in nursing homes statewide since 2005, as well as in homes in Monroe and Onondaga counties.

Also see this review of state legal barriers to implementing POLST orders, that appeared in the March 2008 Journal of Law, Medicine & Ethics. Available from the Oregon Health & Science University (OHSU) website, the research was conducted between October 2005 and May 2006.

Eldercare Notes

A few articles and blog posts touching on eldercare topics from the past few weeks:

• An article from The Tennessean discussing building an in-law suite as a way to provide care for aging relatives in your own home. It discusses the advantages of having elders close by, but still maintaining privacy among the immediate family members. Thanks to the Gen-Between blog for sharing.
  
• The New Old Age blog, from The New York Times, continues full steam ahead with posts discussing what reporter Jane Gross wishes she has done differently when caring for her aging mother, and a post about a documentary, "The Sandwich Generation," which is being hosted on the AARP webiste.
• The blog Tender Loving Eldercare has a post about the role reversal experienced between parents and children and asks readers to share their stories.

Certain Drugs Increase Risk of Falling Among Elderly

University of North Carolina researchers say some prescription drugs that increase the risk of falling among older patients. The medications include common seizure drugs, antidepressants, and painkillers.

Falls are the leading cause of both fatal and nonfatal injuries in adults 65 and older. An estimated 300,000 hip fractures occur each year, often as a result of falling. Head injury is also a problem among adults who fall.

Adults who take four or more medications at a time are at highest risk for falling. But certain types of drugs can also make someone more prone to falling, said Susan Blalock, an associate professor at the U.N.C. Eshelman School of Pharmacy.

The complete list is available as a PDF here.

Children Discuss Their Grandparent's Dementia

This video from the United Kingdom's Alzheimer's Society shows children talking about their experiences of having a grandparents suffering from dementia and Alzheimer's disease. Thanks to the Hospice and Nursing Homes Blog for sharing.

New Blog on Caring for Aging Parents

Jane Gross of the New York Times has started a new blog, The New Old Age, that deals with the challenges of caring for your aging parents. In the blog’s second post, “Our Parents, Ourselves,” Gross discusses the difficulties she and her brother encountered when their mother began to need more assistance. She has struck a cord with readers, who have already contributed hundreds of comments. Reading the comments is as eye-opening as reading her post, as people share their stories of struggling to provide care for their aging parents.

Unfortunately, Gross' experience is not unusual. HFA is ready to help answer any consumer-related questions you have, or we will get you to the place that can help.

Discussion of Changes to the Medicare Hospice Benefit

The Washington Post covers the changes in store for hospices who participate in Medicare. Reporter Alicia Ault pays particular interest in the move toward providing quality measures of hospice providers.

Beginning Dec. 2, hospice organizations will also have to implement a quality assessment and improvement system. Hospices will have to show the Centers for Medicare and Medicaid Services, the agency that administers Medicare, that they are trying to improve in problem areas.

Initially, quality data will be available only to each hospice organization and Medicare. Eventually, providers and advocates expect, data will be shared with the public, as the federal government has done with information on nursing homes, hospitals and home health agencies.

The June 2008 Report to Congress by MedPAC, the Medicare Payment Advisory Commission, also discussed the potential changes in detail and options for how to provide quality measures, starting on p. 227 of the report.

Hospice Professionals Help Ease the Burden of Loss

The Delta County Independent (CO) published an article about how hospice professionals help families dealing with a terminal illness. Hospice honors the patient’s values and eases the physical, emotional, and spiritual challenges as death approaches.

In 2007, 100 percent of the families served by Hospice & Palliative Care of Western Colorado said that they would refer a friend to hospice.

And Delta resident Dottie Boyd feels the same way. In fact, she wishes more people knew about the “absolutely wonderful” care that is provided to patients and families.

“When my husband Bill was admitted to hospice, the process was very smooth. Our family doctor made the referral and the hospice staff immediately became a great source of support to both of us,” says Boyd.

“They spoke to him in a way that was comforting, to make sure that his needs were met. They also allowed him to express his fears and discuss his care,” she said.