Supporting People with Intellectual Disabilities through Illness, Grief and Loss

HFA recently hosted a well-received one hour educational webinar that is now available on-demand as an archived program. A valuable educational offering for individuals or organizations, with CEs included--in an easy-to-access on-line format! One hour of continuing education is available for social workers, nurses and counselors. View the list of board approvals (PDF).

Nationally-known experts Claire Lavin, PhD, and Kenneth J. Doka, PhD discuss the importance of helping those with intellectual disabilities face illness and grief.

"For over sixteen years, HFA has been the leader in presenting high-quality educational programming on hospice care, grief and loss, and end-of-life issues through our annual teleconference," said Amy Tucci, President/CEO of HFA. "This webinar gives organizations a new opportunity to easily access this informative programming."

Participants say:

I and the other attendees today were very pleased with the information. And I always look forward to quality offerings by HFA. Thank you!

My employer offers many educational opportunities on site, however, this was a great chance to stay at home, save money and gain some valuable experience. I would definitely do this again. Thank you!

From the presenters:

"Persons with intellectual disabilities must have support to cope with normal grief reactions, and caregivers need to understand how to help," states Dr. Doka, Senior Consultant to HFA. Dr. Lavin and Dr. Doka discuss how persons with intellectual disabilities may respond to the illness and death of a loved one; the challenges involved when those with intellectual disabilities face their own end-of-life situations; and the role that caregivers play in providing education and support. The speakers also discuss how partnerships between organizations can better serve this population.

Claire Lavin, PhD, is a professor of psychology at The College of New Rochelle in New York. A licensed clinical and school psychologist, she works with children and adults with disabilities in facilities and schools. Kenneth J. Doka, PhD, is a professor of gerontology at the Graduate School of The College of New Rochelle. Dr. Doka has served as a panelist on all sixteen of HFA's Living With Grief National Bereavement Teleconferences. Dr. Lavin and Dr. Doka co-authored Older Adults with Developmental Disabilities.

Register now or learn more about the program here.

Complicated Grief

The subject of complicated grief was discussed during HFA 2007 national teleconference, Before and After the Death, and in the chapter Challenging the Paradigm: New Understandings of Grief, from the companion book.

Today's New York Times puts the academic question of complicated grief front and center in Fran Schumer's article, "After a Death, the Pain That Doesn’t Go Away."

Each of the 2.5 million annual deaths in the United States directly affects four other people, on average. For most of these people, the suffering is finite — painful and lasting, of course, but not so disabling that 2 or 20 years later the person can barely get out of bed in the morning.

For some people, however — an estimated 15 percent of the bereaved population, or more than a million people a year — grieving becomes what Dr. M. Katherine Shear, a professor of psychiatry at Columbia, calls “a loop of suffering.” And these people, Dr. Shear added, can barely function. “It takes a person away from humanity,” she said of their suffering, “and has no redemptive value.”

This extreme form of grieving, called complicated grief or prolonged grief disorder, has attracted so much attention in recent years that it is one of only a handful of disorders under consideration for being added to the DSM-V, the American Psychiatric Association’s handbook for diagnosing mental disorders, due out in 2012.

For more resources, see the Grief section of HFA's website.

Focusing on Falls Among the Elderly

The MacArthur Foundation recently announced its 2009 genius grant recipients. Among them is Mary Tinetti, a physician and professor of medicine, epidemiology and public health at the Yale School of Medicine. Dr. Tinetti "has pioneered the study of a long-recognized, but previously little-investigated, public health problem in gerontology: morbidity due to falls by elderly people. Early in her career, Tinetti undertook efforts to deconstruct the prevailing notion of falls — “accidents” unavoidably associated with advanced age — to establish quantitative relationships between known risk factors and injury."

Recipients of the MacArthur genius grants receive $500,000 in support over five years with "no strings attached."

Addressing Culture in the Hospital Setting

This article in the New York Times discusses a hospital in Merced, CA where Hmong shaman are welcomed in to the hospital to help honor patients' spiritual beliefs.

Because many Hmong rely on their spiritual beliefs to get them through illnesses, the hospital’s new Hmong shaman policy, the country’s first, formally recognizes the cultural role of traditional healers like Mr. Lee, inviting them to perform nine approved ceremonies in the hospital, including “soul calling” and chanting in a soft voice.

The policy and a novel training program to introduce shamans to the principles of Western medicine are part of a national movement to consider patients’ cultural beliefs and values when deciding their medical treatment. The approach is being adopted by dozens of medical institutions and clinics across the country that cater to immigrant, refugee and ethnic-minority populations.

Certified shamans, with their embroidered jackets and official badges, have the same unrestricted access to patients given to clergy members.

Caring for Aging Relatives

The New York Times published a story in their Patient Money column about the costs of providing care for aging relatives. Read an excerpt of the the column below, then check out what people said about it in the Times' Well blog.

About 30 percent of adult children in the United States contribute financially to their parents’ care, according to the Pew Research Center. On average these children pay $2,400 a year on everything from uncovered medical expenses to making sure the refrigerator is stocked each week. The money often goes to parents who diligently saved all their lives, but in the face of longer life spans and chronic illness, the savings just isn’t enough.

With all of the overwhelming emotional and medical aspects of caring for elderly parents, it’s natural to ignore the consequences of spending large amounts of money on them. But so often adult children end up ignoring their own savings and retirement accounts or, worse, go into debt, because they’re taking care of their parents, says Tim Casserly, a lawyer in Albany who specializes in issues of elderly care.

And if you jeopardize your own finances now, you risk putting your children in the same tough spot down the line.

In another report in the Times, John Leland looked at a program in Philadelphia designed to move elderly patients out of nursing homes and back into their own homes or a relative's home. Similar programs are being tried in 29 states through Medicaid.

A growing number of states are reaching out to people like Mr. Brown, who have been in nursing homes for more than six months, aiming to disprove the notion that once people have settled into a nursing home, they will be there forever. Since 2007, Medicaid has teamed up with 29 states to finance such programs, enabling the low-income elderly and people with disabilities to receive many services in their own homes.

The program in Pennsylvania provides up to $4,000 in moving expenses, including a furniture allowance and modifications to the apartment, and Mr. Brown has a home health aide every morning and a care manager to arrange for services like physical therapy. The new programs, financed largely by $1.75 billion from Medicaid, are a sharp departure from past practices, where Medicaid practically steered people into nursing homes.

Urging Change in How We Address End-of-Life Care

This blog post discusses a presentation given by Carol Taylor, director of the Center for Clinical Bioethics at Georgetown University, at the National Press Foundation's Cancer Issues 2009. She discussed this recent blog post, "Prolonging Death," that appeared in the New York Times and her own experiences with her brother's decision to forgo aggressive treatments at the end of his life.

The Pittsburgh Post-Gazette recently published an op-ed written by the chief of palliative care and medical ethics at the University of Pittsburgh Center for Bioethics and Health Law and the chief program officer for the Jewish Healthcare Foundation. The authors compared the current end-of-life experience in the United States to the birth experience in the 1950s. They also discussed the state of end-of-life care in Pennsylvania and urged for more changes.

In the 1950s most births took place in hospitals. Cesarean sections, epidurals and heavy doses of pain medication were the norm. Expectant fathers paced the halls away from the action. Women then began to feel that they were being denied the true experience of giving birth. Throughout the 1960s and 1970s, they challenged the perception that childbirth needed to be treated as a sickness instead of a miracle. Now, decades later, expectant mothers have choices, and fathers participate in the birthing process.

Today, people suffering from life-threatening illness face a situation similar to what expectant mothers faced in the 1950s. The end-of-life experience seems to spiral out of their control. In the 2006 Pennsylvania End-of-Life Background Report, families reported great dissatisfaction with the dying process, particularly in areas of pain management, social and financial burdens, and access to palliative care and hospice services.

Research shows Pittsburghers are more likely to be hospitalized in the last year of life, spend more time in the ICU during their final hospitalization and spend more money than patients in other cities, even though studies show that there is no correlation between intensity of medical services, length of life, or patient and family satisfaction.

Health Insurers Offering Expanded Hospice Coverage

We recently saw a business note of a health insurer in Michigan offering expanded hospice coverage. Hospice care is a covered benefit under Medicare for patients with a prognosis of 6 months or less. (A patient can remain in hospice care beyond six months if a physician re-certifies that the patient is terminally ill.) Many private insurers offer a similar benefit. However, the average patient receives hospice service for less than 70 days*. Many providers believe people might be referred to hospice earlier if the coverage period were longer.

The Journal of Palliative Medicine published a comparative study looking at whether patients would increase their use of hospice when a health plan expanded benefits and made the care more accessible. The study looks at a trial program conducted by Aetna which offered:

. . . expanded insurance benefits for hospice care and added nurse case managers who provided information to patients and their families. The result was a dramatic increase in both overall hospice use and the mean number of days in hospice care. This study must be evaluated in the light of compelling research data over the past decade that shows hospice care provides better care than standard care for patients near the end of life. The percent of patients referred for hospice care and the number of days in hospice care are nationally accepted measures of quality health care. Claire M. Spettell from Aetna and colleagues conclude that more liberal hospice insurance benefits and the addition of comprehensive case management to a health plan can help lead to better health care for patients with advanced illnesses. The authors document about a 70% increase in hospice use in the article entitled, “A Comprehensive Case Management Program to Improve Palliative Care.”

^{* According to NHPCO's Facts and Figures on Hospice Care.}

State of Palliative Care

A few recent items highlighting the state of palliative care in the United States.

• This National Cancer Institute Bulletin focuses on a palliative care training program at Virginia Commonwealth University:
  

  The existence of such a training program is one small step in the evolution of palliative care. The growth and changes in palliative care are particularly significant for oncology, where an aging population and a corresponding increase in cancer incidence are expected to expand the need for palliative services. Now a recognized medical subspecialty whose value and importance have been endorsed by the Institute of Medicine and World Health Organization, palliative care has been shown to improve patient outcomes such as symptoms and quality of life, as well as patient and family satisfaction with care. The largest study of its kind, published last year, also demonstrated it can lead to significant cost savings by, among other things, decreasing intensive care unit visits.

• While at the recent PAINWeek®2009 conference, a survey of several hundred physicians was released showing the need for more palliative care mentorship:
  

  The results of the survey validated the need for a pain mentorship approach to pain management education. The survey revealed that 47% of physicians did not receive formal training about pain and palliative care in their professional education; 64% said that they see the greatest need for a mentoring program is in outpatient (office-based) practice; 46% said that they would request a mentor if this program were to become available; and 42% said they would serve as a mentor.

• CA: A Cancer Journal for Clinicians also recently published an article, "Current Status of Palliative Care—Clinical Implementation, Education, and Research," which urges clinicians to overcome barriers to palliative care:
  

  Care for cancer patients with serious and life-threatening illness and for their families needs improvement. Untreated physical symptoms, poor communication between providers and patients, and treatment decisions in conflict with patient and family preferences characterize the current standard of health care for our sickest and most vulnerable patients. The field of palliative care was developed in direct response to the unmet needs and wishes of patients and their families, and the accomplishments of this interdisciplinary specialty over the past decade have been remarkable. Nonetheless, serious barriers to palliative and end-of-life care implementation remain.
  
  Clinicians are urged to learn more about palliative care in order to overcome some of these barriers. Clinicians cannot practice what they do not know, and, therefore, attending local and national presentations on palliative care to increase their knowledge is an essential initial step. This can occur through local presentations, national meetings, online courses, and individual reading and exploration.

Excellence in Care at the End of Life

As part of the debate on health care reform, there have been a few articles focused on places providing excellent end-of-life care around the United States. One community is LaCrosse, WI, where the biggest hospital there, Gundersen Lutheran, has been at the forefront of ensuring patients plan for the end of their life while they are healthy. From The Washington Post:

The hospital began urging families to plan while people are healthy. For those who want help writing a directive, a physician will discuss the powers and limits of medicine and explain to family members what it means if they agree to serve as the "health-care agent." They will also help people define the conditions under which they would no longer want treatment. Hammes said people often define this as "when I've reached a point where I don't know who I am or who I'm with, and don't have any hope of recovery."

The directives are power-of-attorney forms that protect physicians and family members against liability, and the hospital makes clear to its doctors that they are expected to follow them. Today, more than 90 percent of people in town have directives when they die, double the national average.

The Post also conducted on online interview with Dr. Bernard "Bud" Hammes (Director of Medical Humanities) and Joan Curran (Chief Government Relations & External Affairs Officer) of Gundersen Lutheran where they discuss the efforts there in more detail.

The Chicago Tribune also recently ran an article focused on an effort to improve end-of-life conversations in Chicago that is modeled on the initiative started at Gundersen Lutheran.

. . . in Chicago, end-of-life care experts have launched a citywide effort to encourage such talks -- and not just for terminally ill people, but as a routine element of good health care.

The Someone to Trust initiative, begun in 2006, has trained more than 150 facilitators to lead advance care planning conversations. The program runs pilot sites at major medical centers throughout the city and is collaborating with government and medical policy bodies including the Illinois Department of Public Health, the Illinois Attorney General, the Illinois State Medical Society and Metropolitan Chicago Health Care Council.

A Nurse's Moral Distress

Theresa Brown writes about moral distress in the New York Times' Well blog this week in a post entitled "Prolonging Death at the End of Life." The nurses found it emotionally challenging to care for a dying young man.

Many of us found it hard to come to work. The young man wasn’t my patient, but we all knew him and his parents by sight, and knew their story. As time passed I began to feel deeply ashamed of what we were doing to him. The professional label for the feelings we nurses had is “moral distress,” the anxiety, fatigue and hopelessness that providers experience in the face of medically futile care.

Hospice Care in Nursing Facilities under the Medicare Hospice Benefit

The U.S. Office of Inspector General (OIG) has recently released this report, Medicare Hospice Care for Beneficiaries in Nursing Facilities: Compliance With Medicare Coverage Requirements.

The OIG report sought "to determine the extent to which hospice claims for beneficiaries in nursing facilities in 2006 met Medicare coverage requirements."

The report found:

Eighty-two percent of hospice claims for beneficiaries in nursing facilities did not meet at least one Medicare coverage requirement. Eighty-one percent of claims did not meet at least one Medicare coverage requirement pertaining to election statements, plans of care, services, or certifications of terminal illness. An additional 1 percent of claims were undocumented. Medicare paid approximately $1.8 billion for these claims.

Recommendations are given for improvement, including increasing education for hospices, making tools available to hospices, and increasing compliance monitoring.

Interview with Brad Stuart, MD, Senior Medical Director at Sutter VNA & Hospice

Brad Stuart, MD, is Senior Medical Director at Sutter VNA & Hospice, and the primary author of Medical Guidelines for Prognosis in Selected Non-Cancer Diseases, used to develop the national Medicare hospice eligibility criteria. He has received the Heart of Hospice Award from the National Hospice and Palliative Care Organization, and the California State Hospice Association’s Pierre Salmon Award. In 2007, he was voted “Physician of the Year” by the California Association for Health Services at Home. Dr. Stuart was featured in the HBO documentary Letting Go: A Hospice Journey, and has been interviewed on ABC’s Good Morning America. He wrote and hosted Care Beyond Cure: Hospice Helping Physicians Treat the Terminally Ill, a nationally televised medical continuing education video that won an International Angel Award for Media Excellence. He has published widely and lectured internationally on medical, psychosocial, and spiritual issues at the end of life. This is Dr. Stuart’s third appearance on an HFA teleconference.

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Q. Part of your work with the Sutter VNA and Hospice Care was in piloting the AIM (Advanced Illness Management) Program. Can you talk more about that?

A. AIM originally began with funding from the Robert Wood Johnson Foundation in 1998; it was one of 22 grantees under their “Promoting Excellence in End-of-Life Care” program. The Advanced Illness Management (AIM) program provides home-based palliative care and "transition management" for patients with advanced chronic illness. AIM home care and hospice nurses, social workers and other team members provide pain and symptom management, advance care planning, and end-of-life care to patients who are not yet ready for hospice, or have refused hospice enrollment. Sutter VNA and Hospice Care is a large (26 hospital) integrated system, and the largest nationally that is a non-profit based in one specific geographic area of Northern CA. Our new CEO is very enthusiastic about the AIM model, and we are now piloting a much bigger rollout of the program this fall.

The original program was focused primarily on nurse practitioners visiting homes under the Medicare Plus Choice program. As changes occurred in health care funding, it became necessary to make some changes in the program. As the Primary Investigator, I realized that the program could be based in the Medicare Home Health option. Even though Home Health is primarily focused on patient recovery and safety, I was seeing that approximately 5% of home care patients were actually ready for hospice. I felt it would be more useful to expose people to the broader concept of care rather than waiting for hospice to come in—always keeping in mind that the ultimate goal is to get more people in to hospice, and in earlier, through home care.

Q. Does the use of the AIM model actually encourage earlier use of hospice care?

A. Yes, one of the major outcomes of the program has actually been getting people into hospice earlier. And an unexpected outcome has been that we’ve witnessed a closing of the disparity between white and African American usage of hospice care. We did not initially stratify our data by race, but when we went back and looked, we saw that there was virtually no difference between white and African American utilization of hospice among AIM patients. I think the basics of the program allowed this to happen. We took staff to homes, to where people were. We started the conversations and had them repeatedly, and that combination got patients to hospice earlier. I think one lesson learned is the necessity of institutionalizing advanced care planning, so the doctors can get these conversations going earlier.

Q. Has the AIM program been replicated by other organizations?

A. Other programs have begun to adopt the AIM model, even in different healthcare settings. The Visiting Nurses Services of New York (VNSNY) have started their own AIM program, even though they focus solely on home care and hospice. Sutter VNA has not standardized the model, but has tried to be helpful to other groups that are interested.

If you look down the road at health care reform, there will most likely be the need to provide more integrated care. AIM has been a little bit out front with this, building a business model even under the current reimbursement system. So it can be shown that the model has financial benefits as well.

Under the current system, Medicare is a “loser” for hospitals, so hospitals are shifting costs to health care plans. This is a recipe for disaster, especially in our current economy. AIM targets the “sickest of the sick”. It works because it is needed; it is for those who are hospice-appropriate; it targets the most costly patients.

Q. What changes have you seen in cancer treatment over the past years, and how have those changes impacted the decision-making process for physicians?

A. There have been big changes in treatments, and the impacts of these changes are borne out in the literature. It is clear that cancer care has become more aggressive—this can be seen, for instance, by the number of lung cancer patients who are admitted to the ICU, or who are treated late into their cancer with ventilators or chemotherapy. One researcher, Dr. Craig Earle¹, actually advocates that chemotherapy use in cancer patients with end-stage cancer be an indicator of poor quality care.

The implications for advance care planning, end-of-life care, and hospice are huge. The availability of late treatments, most of which are not effective at curing the cancer, makes it much more difficult for patients to get into hospice earlier. The good news is that ~60% of cancer patients get into hospice. And a study by Stephen Connor has shown that patients with several major cancers live longer in hospice care.

But the bad news is that with more aggressive treatments, the Length of Stay in hospice is getting shorter and shorter. In many ways, hospice has become an “emergency” service—physicians contact hospice when a patient’s pain and symptoms are out of control, but by that point the patient may only end up in hospice 1 or 2 days before death. Approximately 10% of all patients enrolled in hospice care die within 24 hours. This is intensely tough on the staff, who does not have the opportunity to bring the full range of benefits to patients and families. And it’s tough from an economic standpoint. Hospice ends up being “tacked on” to the end of a long line of aggressive, but ultimately futile, treatments. Instead of hospice preventing utilization of other treatments, it just becomes another cost, as the first and last days in hospice care are the most expensive.

Q. Can you address the occupational stresses of health care professionals who work in end-of-life care?

A. This is a huge issue in medicine. It’s understood that physicians don’t receive any real training in handling end-of-life issues, but it takes more than just training. In a recent meeting we had with the panel for HFA’s upcoming teleconference, Dr. Richard Payne asked, “Can you teach compassion?” I think that you can, but it boils down to having the courage to say the right things and the perseverance to make sure those things are heard, to the extent people are willing.

Nurses tend to do better, but dealing with the hard emotions that go along with caring for the dying, and continuing to find it fulfilling, is a great challenge. How do you learn to sit with something that can’t be fixed? So much of the protest we hear today against end-of-life planning is based in fear or anger, but in reality this work means being present for the most profound times in people’s lives.

Q. What are some personal or organizational techniques that you’ve found to be helpful?

A. I think we need to realize that the real work starts when options for cure have run out. For physicians, the real work is centered in ourselves, and the need to become more aware. For many physicians this work is not necessarily a “calling”—that’s why it takes practice. This awareness of our own fear, our own pain, is our real “practice.” You can work to become more competent and more confident in helping patients face the end of life. And when you are in a room at a family meeting, that family can feel your confidence. When that professional confidence is there, the family can really hear what you are saying and they can really think about what decisions they need to make.

In talking to other professionals about having those difficult conversations, I try to start where they are comfortable. Try to get into why people became doctors. I firmly believe that everyone wants to be a part of the healing process. We all want to be healed, even when we can't be cured.

Q. This will be the 3rd HFA teleconference on which you’ve been a panelist. What has that experience brought to your work, and what value have you found as a physician in participating in the program?

A. I love this particular topic [Cancer and End-of-Life Care]; it’s very timely and important. One of the great things about this teleconference is that it gives us the luxury to really talk about these issues in some depth. For someone like me in this field to have the time to really explore some of these issues—it’s very rare to have concentrated time to look at these important issues in depth, and I’m pleased to be a part of it again.

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¹ Editor’s Note: More information can be found in an article by Earle and other authors, “Evaluating Claims-based Indicators of the Intensity of End-of-Life Cancer Care”, in the International Journal for Quality in Healthcare, 2005, Vol. 17, No.

Another View on Language Matters

We've posted about language matters before, here (do not resuscitate vs. allow natural death) and here (supportive care vs. palliative care.) Last week, the relatively new blog GeriPal (a geriatrics and palliative care blog) dug in to the subject of the language that surrounds a cancer diagnosis and death with this post, "A Rant on Terminology."

HFA is focusing its 2010 initiative on Cancer and End-of-Life Care. The terminology surrounding cancer care will be just one subject this year's national teleconference will touch upon.

Not Seeing the Caregiver in the Mirror

This CureToday article talks about the challenge self-identification among caregivers. Many people who provide care to a loved one with cancer for example, do not think of themselves as caregivers, and therefore do not seek resources that are available.

A series of workshops called the CARE (Cancer Advocate Resources and Education) campaign is being launched by The Wellness Community to help raise awareness.

A caregiver, according to The Wellness Community, is anyone who provides physical, emotional, financial, spiritual, or logistical support to a person with cancer, and can be a family member, friend, neighbor, long-distance relative, nurse, or spouse. Yet when respondents to The Wellness Community survey were asked to identify who they thought were caregivers, most people identified a spouse or someone in a professional role, such as a nurse. Furthermore, 99 percent of the people surveyed expect the patient to need assistance at least once a week. Because they might be defining caregivers in a traditional sense or by time limits, many people might not recognize themselves as caregivers despite performing caregiving activities or they place most of the focus on the patient.

Palliative Care Grand Rounds 1.8

The eighth edition of Palliative Care Grand Rounds, a "monthly blog carnival" highlighting blog posts related to hospice and palliative care, is up at the Confessions of a Young (looking) Social Worker blog.