Volunteers Help Incapacitated Adults With No Family Or Friends

Volunteers Help Incapacitated Adults With No Family Or Friends

Posted on Saturday, December 20th, 2014 at 4:18 pm by lifemediamatters

Incapacitated adults without family or friends benefit from volunteer surrogates that act as medical decision-makers and patient advocates before, during and after hospitalization, according to findings from an innovative program to train surrogates.

Adults without surrogates are often estranged from family, face abuse and neglect, and are at high risk of receiving unnecessary medical treatments as they age. The study, published in the Journal of the American Geriatrics Society, followed the first 50 patients enrolled in Indiana’s Wishard Volunteer Advocates Program, an effort produced by the Regenstrief Institute and Eskenazi Health, a public safety-net health system.


Robin Bandy, program director

Volunteer surrogates were supervised by Robin Bandy, an attorney and the program’s founding director. Legal guardianship was formally assigned to the Volunteer Advocates Program. More than 90 percent of those who survived hospitalization were transferred to nursing facilities, according to the study, and many continue to receive visits.

Patients ranged in age from 22 to 90; average age was 67. All but one of the patients had at least four medical conditions at the time of hospitalization.

“It’s always been a challenge to find people to speak for adults who don’t have anyone. The adults who are enrolled in our program are people admitted to the hospital with no friends or family who can be their decision-maker or advocate on their behalf,” said Dr. Alexia Torke, a Regenstrief Institute and Indiana University Center for Aging Research investigator. “Some of them don’t have contact with their own family. Some have been abused or neglected by family.”

Volunteers made health care decisions, including end of life decisions, facilitated post-hospitalization placement to nursing facilities and were often the only people to monitor care in nursing homes after hospital discharge. Torke said some patients are able to interact and form relationships with guardians, although many remain unconscious.

“The majority of these patients were so incapacitated by the time they came into our program there was no way they could have done advance care planning,” said Bandy. “We had to go to court to get guardians appointed, because they had no capacity to make their own decisions.”


Dr. Alexia Torke

Among those assigned volunteers after hospitalization: an 85-year-old woman with dementia who had been living alone with her dead cat in a dilapidated apartment; a 65-year-old woman with dementia removed from her son’s care after he broke her arm; a 90-year-old man removed from his home, malnourished and covered in urine and bedbugs – his caregivers were not allowing him access to food or medicine.

“Many patients had not had basic, routine medical care for years,” Bandy added. “It’s important to have someone advocating for the patient, to make sure they get the medical care they need and not only in a crises.”

Some of them don’t have contact with their own family. Some have been abused or neglected by family.

Torke said she hopes the program will serve as a national model to replace or complement the frequently overwhelmed guardianship services provided by state agencies. An incapacitated adult may face Alzheimer’s disease, dementia or coma. Program volunteers are assigned only one or two patients.

“Guardianship services have really been a patchwork state-by-state. Each state has tried to find a solution, and in Indiana there actually were not any state guardians available. There was a desperate need,” Torke added. “We have had no trouble finding volunteers to train, and many have health care or social service experience. This program has tremendous potential to be expanded, however, it is able to take place in Indiana because state law allows this kind of system.” A state statute allows guardianship programs that are not tied to the government.

Securing Hospice Care: An Interview With Dr. Kathleen Unroe

Posted on Thursday, December 18th, 2014 at 9:55 am by lifemediamatters

Nursing home patients have longer hospice stays when compared to similar individuals receiving care at home or in their local community, according to a new study published in the Journal of General Internal Medicine. Nursing home patients also tend to be older, less financially secure and female.

Researchers, led by Dr. Kathleen Unroe, a Regenstrief Institute investigator and Indiana University Center for Aging Research scientist, determined that nursing home hospice patients are more likely to receive aid from both Medicare and Medicaid and suffer from dementia. Nearly 3,800 patients were surveyed.

The study, which also details how hospice patients move-in-and-out of care settings, aims to provide policymakers with guidance for best practices. One-third of U.S. hospice patients live in nursing homes.

Unroe spoke with Life Matters Media about the benefits of hospice care, the importance of advance health care planning and Medicare spending.

What inspired you to study hospice care in nursing homes?

I’m a nursing home physician, and I care for patients in a facility that specializes in dementia. I’m interested in understanding more about who in nursing homes uses hospice, who doesn’t and how it impacts the quality of end of life care.

I’m also interested in health policy, and there are also some tricky things about how the hospice benefit is structured. For example, if a patient is hospitalized and clearly near the end of life and hospice eligible, often he or she will still go to a nursing home on a skilled nursing benefit, because of the way that benefit is paid.

In this particular data set, I have linked Medicare and Medicaid claims, as well as minimum data set assessments on nursing home patients. It’s a nice, rich data set to follow the experience of patients.

Why are nursing home hospice patients older and less financially secure?

Nursing home hospice patients are reflective of the overall nursing home population, which tends to be a very elderly population, which also tends to be female. Nursing home days are predominately paid for by Medicaid.

Being in a nursing home is so expensive that most people will become impoverished to the point where they become eligible for Medicaid in order to pay for their care. Medicare does not pay for long-term care, so a person has to pay for nursing home expenses out-of-pocket or have long-term care insurance pay until Medicaid eligibility. Many people exhaust their resources to pay for 24-hour custodial care.

Dr. Kathleen Unroe

Dr. Kathleen Unroe

Nationally, 40 percent of Medicare patients die with hospice care. Your thoughts?

Hospice is only a few decades old, and it is now reaching 40 percent of all people. I think that when you consider how many people have short lengths of stay – in my study, 27 percent had hospice for a week or less – then yes, the benefit is underutilized.

Late referrals are especially problematic, because people are not getting enough time to truly benefit from the services hospice provides. Why is it only 40 percent, and why are so many people of that 40 percent on hospice for such a short time? I think there are a number of reasons.

In the nursing home population, prognosis is especially difficult. There are a lot of people with advanced dementia as a primary cause of death or suffer from a number of medical problems. It is not as clear-cut a trajectory as terminal cancer.

So, it is difficult to know how much time someone has left, and it complicates referral to hospice, because the hospice benefit has the six-month eligibility criteria. Two physicians need to confirm that your prognosis is six months or less. People wait.

There are also some people who will never accept hospice as it is currently structured. Hospice replaces your Medicare Part A benefit, so you have to forego curative therapy. Some people will never seek it.

How can physicians and nurses encourage more seriously ill patients to opt for hospice care earlier?

I think the heart of it is advance care planning. In Indiana, we just launched a POST program, Physician Orders for Scope of Treatment, which is based on the national POLST model.

I think POST makes a big difference, because if nursing homes build into their policies and procedures- or even just their culture- a goal of addressing these issues in a proactive way, they can better identify people whose goals-of-care are comfort focused.

Advance care planning helps get end of life conversations started earlier, and even helps build relationships between hospices and nursing homes. But advance care planning is so often missed. Every nursing home patient deserves an hour-long conversation about prognosis, about goals-of-care, about expected symptoms and complications from disease.

Medicare declined to reimburse physicians for end of life conversations in 2015, would that have helped to encourage advance care planning?

Time and reimbursement are issues, but I have also come to the belief that it doesn’t have to be the physician to lead these conversations. Yes, physicians must be involved, and I don’t want to absolve us of our incredibly important role in these conversations, but don’t leave it all up to us.

I think that social workers and nurses that have received additional training in having these conversations can lead, and then a physician can be involved to answer specific questions and sign orders. We need to encourage our partners to create time and space to have these conversations that should not be rushed. I don’t know if doctors can ever have these conversations with every patient, or at least not be the only person involved.

Yes, providers should be reimbursed for doing this important part of our job.

‘Warehouses For The Dying’: Are We Prolonging Life Or Prolonging Death?

Posted on Wednesday, December 17th, 2014 at 3:12 pm by lifemediamatters

The doctor floated through the intensive care unit, white lab coat flapping, moving from room to room, scanning one chart and then another, often frowning.

Unlike TV dramas, where the victims of car crashes and gun shots populate the ICU, this one at Sentara Norfolk General, as in others in the United States, is more often filled with the wreckage of chronic disease and old age (The Washington Post).

Facing Mortality

Posted on Wednesday, December 17th, 2014 at 3:11 pm by lifemediamatters

Dr. Atul Gawande discusses how doctors in rich countries handle end of life care, and why we must not shy away from the question of our own mortality (The Economist).

Chicago Cultural Center Hosts “Death With Dignity” Event

Posted on Sunday, December 14th, 2014 at 8:30 am by lifemediamatters

COMPASSION&CHOICESHundreds gathered at the Chicago Cultural Center to learn about and debate so-called “Death with Dignity” legislation on Saturday. The event, sponsored by nonprofit advocacy group Compassion & Choices, included a panel discussion and screening of How to Die in Oregon, a 2011 documentary exploring the state’s physician-assisted suicide law.

“This is not about a political stance, it’s too personal,” said Compassion & Choices President Barbara Coombs Lee during the panel discussion. “Seventy-four percent of people in the United States believe that folks should have the choice of aid-in-dying. This cuts across all population areas and demographics.”

Proponents of “Death with Dignity” legislation argue that such laws increase patient autonomy at the end of life, because the seriously ill can avoid suffering and die on their own terms. In Oregon, the first state to legalize physician-assisted suicide, terminally ill adults in their last months of life may self-administer a prescribed lethal dose of barbiturates.

Brittany Maynard has changed everything. She has single-handedly transformed our whole movement from from one organization working actively in the field to a broad movement where all kinds of people are introducing bills and filing lawsuits and becoming active,” Lee added. “We will see bills advancing in many, many states. Her brazen visibility helped to increase momentum.”

Maynard, a 29-year-old newlywed, moved to Oregon from California to take advantage of the state’s “Death with Dignity” law and ingested a lethal dose of doctor-prescribed barbiturates in November. After being diagnosed with an aggressive brain tumor in January, she chose to become a national spokesperson for Compassion & Choices. News of her death made headlines across the world and sparked social media debate regarding hastening death.

“Now that I’ve had the prescription filled and it’s in my possession, I have experienced a tremendous sense of relief. And if I decide to change my mind about taking the medication, I will not take it,” Maynard wrote in an op-ed published by CNN shortly before her death. “Now, I’m able to move forward in my remaining days or weeks I have on this beautiful Earth, to seek joy and love and to spend time traveling to outdoor wonders of nature with those I love. And I know that I have a safety net.”


News of Brittany Maynard’s death made headlines across the globe

Lee said many patients who fill their prescriptions for life-ending drugs never take them, because they only want the option of ending life. About 800 individuals have used the Oregon law to die since it was enacted in 1997.

But some disability rights groups, medical providers and religious organizations, including the Roman Catholic Church, maintain that physician-assisted suicide is unnecessary and endangers the most vulnerable patients.

No physician, bioethicist or critic of physician-assisted suicide was represented on the panel, moderated by Alison Cuddy, program director of the Chicago Humanities Festival.

The American Medical Association, the nation’s largest physician organization, strongly opposes physician-assisted suicide. The AMA maintains the policy is incompatible with physicians’ role as healer.

“It is understandable, though tragic, that some patients in extreme duress – such as those suffering from a terminal, painful, debilitating illness – may come to decide that death is preferable to life,” according to an AMA statement sent to Life Matters Media. “However, allowing physicians to participate in assisted suicide would cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

According to a 2013 poll conducted by the New England Journal of Medicine, 67 percent of more than 1,700 of its U.S. readers were against physician-assisted suicide.

Members of Not Dead Yet, a national disability rights group that opposes all forms of aid-in-dying legislation, turned out to voice opposition to “Death with Dignity” and the documentary, which centers on a terminally ill cancer patient who ingested a lethal dose of doctor-prescribed drugs.

“We want to make sure the disability angle is included, because all too often, people with disabilities voices are not heard or are stigmatized. We are here to ensure the audience understands that not everybody with a terminal illness wants the right to death,” said Scott Nance, a member of the nonprofit.

Physician-assisted suicide is legal in four other U.S. states: Washington, Vermont, Montana and New Mexico.