Caregiving in the U.S. Study

The National Alliance for Caregiving and AARP released an updated version of their Caregiving in the U.S. report earlier this month, which surveys 1,500 caregivers around the country. The New York Times' New Old Age blog posts about the report and the NYT Economix blog addresses what the impact would be of paying family caregivers:

Most of the money would go to women, who represent 67 percent of all caregivers. If care recipients themselves paid the bill, most of the money would come from women, who represent 68 percent of elder-care recipients. Indeed, the average unpaid elder-care provider, at age 50, balances on the cusp of the dependent age category.

Women live longer than men on average and therefore become more vulnerable to the care-intensive problems of extreme old age.

Economists tend to assume that women simply choose to provide care because it gives them satisfaction. But more than 43 percent of all caregivers in the survey reported that they felt that they had no choice. They stepped forward for a variety of reasons: because no other family member or friend was willing or able to provide adequate care or because paid services were economically out of reach.

The Future of Aging blog, the Los Angeles Times and the Wall Street Journal also posted about the report.

Palliative Sedation in the News

The New York Times published a lengthy article Sunday on palliative sedation, the practice where patients near the end of life are given medications at a level that causes sedation, in order to relieve their pain and distress. The article follows the stories of a few patients, their families, and their doctors as they consider this end-of-life care option. The article includes a slideshow and has received numerous comments on the NYT website.

The About.com Palliative Care blog has also posted information about this article, along with general information on palliative sedation. The Health Culture blog includes some older articles on the subject as well. The Pallimed blog covered a piece that appeared in the September issue of the Annals of Internal Medicine that included several article responses.

UPDATE 12/31/09:
Drew Rosielle at the Pallimed blog weighs in on the NYT article. NHPCO (National Hospice and Palliative Care Organization) also released comments.

A Glimpse at HFA's 2010 Teleconference Interviews

As we prepare the video portion of the upcoming Cancer and End-of-Life Care program, we've interviewed some incredible people who have shared their expertise and experience. Here are thumbnail sketches of just a few you'll get to know during the teleconference.

Jon Wiant took care of his wife, Cay, after a cancerous brain tumor and repeated surgeries left her partially paralyzed. Together, Jon and Cay journeyed cancer's roller coaster legacy of success and failure. They endured treatments, surgeries, remissions and regrowth of the cancer. Their lives revolved around admissions and discharges from the hospital. Doctors told them they had exhausted medicine's reach, yet didn't offer specific "what next" advice. After months of being her primary caregiver, Jon fell at home while lifting Cay and badly injured his knee. He visited his own doctor, who suggested that he and Cay consider getting help from hospice. He recalls his apprehension prior to contacting hospice, feeling that if he turned to hospice it would signal to his beloved wife that he was giving up on her. "Hospice for me was like a little cottage...where you came in and they had new age music and you sat and it was just a peaceful way to die outside of the hospital." But he and Cay decided to give hospice a try despite initial misgivings. "The most important things for me...were my ability to call at any hour of the night and get an answer...I managed here to have something that was as supportive as the team that we had in the hospital without having to go [there]."

Kathryn Beavers is in her early 50s and has a form of cancer that leaves her with episodes of excruciating pain. She is receiving palliative care from a palliative care consulting group owned by a hospice while she continues treatment to slow the growth of tumors. She credits the palliative care group with allowing her to continue to enjoy life and cope with the pain, and she hasn't considered using hospice. Before her medication was carefully managed by the palliative care team, she once fell face first in her driveway because of improper over-medication, badly injuring her nose and requiring corrective surgery.

"I'm in my third round of chemotherapy in two years time. I've had radiation twice in the last two years.... The tumors ...some of them are located in places that hurt very very much. So I am on pain
medications and I'm on other kinds of medications just to help me get through the day. I still work; I work full time. I don't really do much of anything else though. Usually by the end of the day I'm wiped out."

Michon Lartigue moved from the East Coast to Colorado to help her 62-year-old father and family while her father undergoes treatment. She speaks of the experience and offers some advice when it comes to incurable cancer: "It's a difficult place to exist, I think, on a long-term basis, and you sort of have to figure out ways to cope, and really be in the moment, but then also be able to move away and enjoy the time, the present sort of moment that you're experiencing. And whether that's in the doctor's office, and -- or whether that's with family and friends, and -- or whether it's watching TV... think you just sort of have to learn how to sort of navigate each piece as best as you can."

Jennifer Alkhayat is a nurse practitioner with Capital Palliative Care Consultants. She works with patients with a broad range of diagnoses, but most are cancer-related. She answers the age-old question: "Can a person's pain always be managed? Each person is different. There's so many different factors that go into each type of pain, whether it be spiritual, psychological, or physical pain. We use the best tools that we have available to us to make sure that...we can control people's pain the best we can, and for each person that's going to be different....A lot of times we use the 0 to 10 scale on how your pain is. What we like to do is find out what is a level of acceptable pain for you? Whereas your level may be 0, somebody else might -- if they can get down to a level of 5, that might be acceptable to them. So we constantly are just trying to meet the goals of each individual patient... And manage the pain the best that we can."

Palliative Care Notes - December 2009

• The National Institute of Nursing Research has published a new brochure that highlights the benefits of palliative care

  A new brochure describes a comprehensive treatment that helps reduce or eliminate the pain and other distressing symptoms of illness and medical treatments. "Palliative Care: The Relief You Need When You’re Experiencing the Symptoms of Serious Illness," produced by the National Institute of Nursing Research (NINR), a component of the National Institutes of Health, explains in easy-to-understand language what palliative care is, who it benefits, and how it works.

• Bob Arnold posts on GeriPal about the downside of the growth in palliative care. He is concerns that palliative care physicians may be:
  

  . . . deskilling other doctors. Unfortunately, if the patient is viewed as dying, the primary teams feel that they should back off and ask palliative care to "take over". So house staff and junior internal medicine house staff do not have the opportunity to have these conversations and receive feedback.

• Also at GeriPal, Alex Wright opines on how pilot programs envisioned in some health care reform legislation might impact palliative care.

• The Seattle Times published an article last month on the growing demand for palliative care doctors and the need for more programs to train them. The article stated 62 medical schools currently offer palliative care training.
  

• Tim Cousounis of DAI Palliative Care Group uses data of palliative outcome measures drawn from the Dartmouth Medical Atlas to review hospital palliative care programs in Pennsylvania.

Eldercare and Aging Notes - December 2009

• Dr. Lewis A. Lipsitz, professor of medicine at Harvard Medical School, wrote an op-ed last month in the Boston Globe about the need for geriatricians and the role they play providing health care for aging Americans. (Thanks to Ken Covinsky at GeriPal for highlighting the piece.)

  Geriatric medicine cuts across all diseases that contribute to the functional problems an older adult might have. An older patient typically goes from one specialist to another, with each doctor treating a single problem, but often not looking at the patient as a whole. The patient may receive treatment, but quality-of-life goals are rarely discussed.

• The California Health Foundation has published a brief on various types of aging in place, including:

  • Naturally Occurring Retirement Communities (NORCs);
  • Living At Home/Block Nurse Programs;
  • Villages;
  • Senior Cohousing; and
  • Senior Cooperative Housing.

  
  
  California's seniors want to remain in their homes and communities as they age, a healthier -- and less expensive -- solution than institutionalization. Successful aging within the community requires economic security, adequate and affordable housing, and access to health care.
  
  Examples of programs using these models are described in terms of governance and structure, target population, annual fees, entry age, staffing, and funding. The report also discusses national and state policy issues. As the population ages, it will be increasingly important to find healthy and affordable solutions for community living for seniors.
  

• Paula Span discusses continuing care retirement communities (C.C.R.C.'s) again on the New Old Age blog, emphasizing the confusion over costs.

  C.C.R.C.’s, remember, allow residents to transfer from independent living apartments to assisted living to a nursing home, all on the same campus or in the same building, as their needs increase (though in the event, they seem as reluctant as other seniors to actually move ). “Yes, being able to take that burden off your kids is wonderful,” a reader, Alice Payne, commented. “But I suspect that the costs are going to prohibit most from taking advantage of such care.”

  To which I can only reply, after many phone calls: That all depends. The reason it is hard to know what a C.C.R.C. costs is that price tags vary enormously, reflecting not only regional costs of living and amenity levels (communities range from modest to luxurious), but also contract types. Unlike assisted living facilities or nursing homes, C.C.R.C.’s around the country — there are about 1,900, after a period of growth largely squelched by the recession — offer fundamentally different products.

Spiritual Care Important in Meeting Needs of Terminally Ill Cancer Patients

Research published this week in the Journal of Clinical Oncology examined the spiritual needs of terminally ill cancer patients and whether they were being met by the medical team. Researchers at Dana-Farber Cancer Institute interviewed 343 patients at hospitals and cancer centers across the United States and concluded that supporting spiritual needs resulted in greater hospice utilization and less aggressive care at the end of life. Providing patients with spiritual care was associated with better patient quality of life. Health Day News also covered the study.

HFA's 2010 National Teleconference will focus on Cancer and End-of-Life Care, and addressing spiritual needs is an important component of the teleconference. At the end of the teleconference, participants should be able to:

1. Understand the complexities of professionals working with end-stage cancer patients and families when transitioning to hospice and palliative care from curative treatment, including how to employ effective communication skills, practices and protocols while also sensitively recognizing obstacles to the transition for the patient and family, which may involve medical, psychological, social, financial, caregiving, and spiritual needs. Validate programs that seek to bridge the move from treatment to palliative care as particularly helpful in today’s healthcare environment, as cancer patients often receive curative treatment up until several days before death. Understand that families may need help navigating the transition and should be supported throughout.
2. Describe the range of physical, psychological and spiritual reactions that people who are dying of cancer may have and how to respond to and validate those reactions through a variety of approaches and therapies, which include but are not limited to: effective pain management, reminiscence and life review, doula programs, dignity therapy, massage, music and meditation.
3. a.) Assess the varied and individual ways that families and other caregivers are coping with cancer and the imminent death of the patient, including whether they struggle with ambivalent feelings, complicated relationships, anger or guilt, and how to best intervene and provide support in a variety of situations, including those when a child or adolescent or an adult child is dying. Recognize and prepare to refer to patients and families to community assets available for support, including faith communities when appropriate.
   b.) Understand that professionals, paraprofessionals, and volunteers caring for cancer patients often experience occupational stress that can be overcome in a variety of ways, including understanding the importance of intentional, focused behavior and the difference they make for patients and families.
4. a.) Acknowledge that decisions made and events that occur during the cancer illness and dying process can change the course of bereavement; understand that grief is individual and has multiple manifestations that may or may not need professional counseling and/or support, and that faith communities and other community organizations should be empowered to help give support to grieving people.
   b.) Share awareness that professionals working with cancer patients can also experience vicarious grief, counter-transference and transference, and recognize that hospices can provide effective support to professionals as they cope with loss in their professional lives.

Worldwide Candle Lighting Service This Sunday

This Sunday, December 13, will be the 13th annual Worldwide Candle Lighting Service of the Compassionate Friends.

The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor children in a way that transcends all ethnic, cultural, religious, and political boundaries.

Believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

Read HFA's interview with the Compassionate Friends Executive Director, Patricia Loder from 2008.

HFA Presents Webinar on Bereavement Camps for Kids: Benefits and Challenges

Nationally-known expert Kenneth Doka, Senior Bereavement Consultant to Hospice Foundation of America (HFA), will host a discussion of the need for, and role of, bereavement camps as an intervention for children, adolescents, and their families during Hospice Foundation of America’s (HFA’s) live online webinar on Monday, February 1, from 1pm—2:30pm EDT. Dr. Doka will be joined by Sherry Schachter, Director of Calvary Hospital’s annual bereavement camp in New York; Angela Hamblen, Director of Camp Good Grief in Tennessee; Bonnie Carroll, Executive Director of TAPS, which offers support to those suffering the loss of a military loved one; and Lesa Linster, National Camp Erin Project Director at The Moyer Foundation.

“Almost 875,000 children and adolescents have experienced the death of a parent ,” states Dr. Doka. “Camps can be an innovative and successful milieu for supporting bereaved young people.” The speakers will examine underlying theoretical models of bereavement camps; identify some considerations in developing a camp program, including setting the target population, securing funding, and training staff and volunteers; discuss compliance issues; and explore some special issues that may arise. Schachter, Hamblen, and Carroll will each discuss their specific experiences in running a bereavement camp, focusing on camp structure, which children may benefit most from the program, and successful activities. The webinar and supporting materials will offer a toolbox of practical information such as intake forms, publicity materials, and hands-on suggestions.

“If you already run a camp, this webinar will reaffirm and review the most current information and best practices,” notes Amy S. Tucci, CEO/President of HFA. “If your organization is considering starting a camp, this webinar will be a great place to explore this new and viable approach to serving the bereaved youth of your community.”

Register here. The Organization Registration Fee is $100, which allows access to both the live webcast and an archived online program for one year past the live webinar, with unlimited CEs (1.5 hours) available for a wide range of professions. Individuals may register for the live webinar for $35 and 1.5 hours of CE credit is included for the registered individual.

To learn more about this exciting educational offering, contact HFA at 800-854-3402 or http://www.hospicefoundation.org/webinars.

Revised Hospice Payment System Fact Sheet Available

From the Centers for Medicare & Medicaid Services (CMS):

The revised Hospice Payment System Fact Sheet (November 2009) is available. This fact sheet provides general information about the Medicare hospice benefit including coverage of hospice services, certification requirements, election periods, how payment rates are set, patient coinsurance payments, caps on hospice payments, and additional reporting required on hospice claims.

December 2009 Palliative Care Grand Rounds

The December 2009 edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Death Club for Cuties blog.

Hospice Care in the News

An Associated Press article published this past Sunday looks at how hospice care has grown since the first hospice opened in the United States thirty-five years ago.

The number of Medicare hospice patients almost doubled between 2000 and 2007, to nearly 1 million. During the same period, Medicare hospice spending jumped 250 percent because of increased enrollments and longer lengths of stay, according to a committee that advises Congress on Medicare.

The medical community helped further legitimize the industry recently by offering certifications in hospice care for doctors, nurses and nursing assistants. The American Board of Medical Specialties first issued doctors certificates in hospice care in 2008, when it handed out 1,272 certificates.

In yesterday's Personal Health column from The New York Times, Jane Brody writes about a day she spent visiting four hospice patients with the Visiting Nurse Service of New York.

Hospice workers never know what they may find when they enter the homes of people whose doctors expect them to die within six months. But they are prepared to handle almost anything and have a team of specialists to call upon when needed: doctor, nurse, social worker, spiritual care counselor, bereavement counselor. The home hospice service is but a phone call away 24 hours a day, 7 days a week. The needs of patients and families are met within hours, if not sooner; moreover, the cost is usually covered by Medicare or Medicaid.

With hospice, death assumes a more natural trajectory, unencumbered by frightening machines and sometimes grotesque interventions of modern medicine that do little, if anything, to prolong life and often make dying more painful for patients and families, as well as costlier for society.

Indeed, studies have shown that, all other things being equal, patients receiving the comfort care provided by hospice tend to live longer and die more peacefully than those who continue to get intensive care for their disease when treatment has ceased to help.

Another great resource to find a hospice in your area is HFA's Hospice Directory, http://www.hospicedirectory.org.