Tag Archives: Palliative care

Hospice and palliative care in Assisted Living

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Photo courtesy Vista Springs Assisted Living

By Vista Springs Assisted Living


End-of-life care options like hospice and palliative care are often associated with nursing homes or specialty houses and hospitals. Contrary to this common thought, many assisted living communities partner with these care services as the high population of seniors continue to grow older and need a continuum of care.


These types of care are difficult to talk about because they are administered to loved ones who are struggling with serious illness or are near the end of life. However, assisted living communities are focused on providing the best care for residents, including at the end of life and will often have these care solutions available. Looking into the difference between palliative care and hospice care in assisted living communities can help you know what to do when making difficult decisions for family members.

Palliative Care

What is palliative care?

Palliative care is the general term for any type of care that focuses on relieving pain and managing symptoms of serious illness, including mental and emotional pain and symptoms. Palliative care is used for people who suffer from illnesses like:

  • Heart and cardiac diseases
  • Cancer
  • Dementia
  • Parkinson’s Disease
  • Kidney, liver, or lung diseases
  • Strokes

Palliative care teams work across multiple disciplines to provide emotional, mental, and medical support for patients. The biggest difference between general palliative care and the more specific hospice care is that palliative care doesn’t necessarily mean the patient is no longer receiving treatment for their condition. Palliative care works alongside medical treatment plans to relieve symptoms while still receiving treatment.

When does your loved one need it?

If your loved one is suffering from serious diseases or symptoms that cause them daily pain, but doesn’t necessarily have a prognosis of when they will reach end-of-life, then palliative care might be a good option to consider.


To put it plainly, if your loved one is still seeking treatment and hoping to find a cure or way of managing their illness for a longer term than six months, then palliative care can help them manage their symptoms during that process.

Palliative Care in Assisted Living Communities

There aren’t palliative care facilities like hospice hospitals and homes, so if you decide on utilizing palliative care for a family member then the palliative care team will come to your loved one’s current home. Many assisted living communities are partnered with palliative care organizations to help make the entire situation easier on you and your loved one.


Assisted living communities will sometimes have a part-time or full-time palliative care team on staff to provide care services to residents as needed, without having to work with or schedule with a separate organization.

Hospice Care

What is hospice care?

The most common definition for hospice care is a care service that works to manage pain and serious health issues in patients who have been given a diagnosis of six or less months to live. Hospice care is a subset of palliative care, so it will focus on helping the individual rather than treating the disease, but is specifically for end-of-life rather than general symptom management.


Focusing on pain reduction, managing existing symptoms, and providing the highest quality of life possible for patients, hospice care is a common option for people who are nearing the end of life. Hospice care is only used once a six-month diagnosis has been reached and aggressive treatment options have stopped.

When does your loved one need it?

Deciding when hospice care is needed is an incredibly hard decision for family members because it involves admitting that your loved one is near the end of life and that there isn’t going to be a continued plan for treatment of their illness going forward.


The important thing for family members to keep in mind is to focus on providing the highest quality of life possible for loved ones. Hospice care teams are dedicated to ensuring that your loved one is getting the most out of end-of-life care.


Hospice care is different from palliative care, which can be administered alongside other treatment options as a pain and emotional management solution while still seeking treatment. Hospice care is only administered after stopping treatment methods and only once an approximately six-month until end-of-life prognosis is given.


It is important to note that hospice care does not have to be a permanent or final care solution. At any point during hospice care you can choose to remove your loved one from the hospice care plan and have them begin treatment again or try a different kind of care.

Hospice Care in Assisted Living Communities

Hospice care also differs from palliative care because hospice often has its own treatment centers called hospice houses or hospitals. These specialized treatment centers are the most common way that hospice care is administered, with patients coming to stay in these centers for end-of-life care, but it isn’t the only way hospice care is given.


If the family decides it is best for their loved one to stay at home and not move to a different location for end-of-life treatment, then hospice workers can come and help with treatment in other places than a dedicated hospice care center. With a rising population of aging seniors that need hospice care, many assisted living communities have strong partnerships with local hospice organizations to provide the best of care for residents in their community.


Hospice and palliative care aren’t pleasant topics to think about, but it often becomes necessary to discuss these options as our loved ones age. Remembering to keep the quality of life of our family members first and knowing the differences between the two types of care can help make end-of-life decisions easier for everyone.


Reprinted with permission from Vista Springs Assisted Living.

Many Americans face pain, depression in their final year

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By Amy Norton, HealthDay

 

For a growing number of Americans, the final year of life is marked by pain, depression and other distressing symptoms, a study has found.

 

Experts said the study, published in Annals of Internal Medicine, highlights disturbing shortcomings in the U.S. health care system.

 

Researchers found that between 1998 and 2010, the number of Americans who suffered pain in their last year of life rose from 54 percent to 61 percent.

 

Meanwhile, the prevalence of depression rose from 45 percent to 57 percent, while other symptoms — such as breathlessness, confusion, severe fatigue and incontinence — either increased or did not improve.

 

“These findings are troubling,” said senior researcher Dr. Karl Lorenz, of the Pardee RAND Graduate School and the University of California, Los Angeles.

 

The increase in end-of-life symptoms, Lorenz said, has occurred despite national efforts to improve end-of-life care, dating back to the 1990s.

 

Those efforts have made a difference. The number of Americans in hospice care doubled between 2000 and 2009, the study noted. Hospice care focuses on easing symptoms and improving quality of life for people with a terminal illness.

 

But often hospice care isn’t offered until the last few weeks or days of life, Lorenz said.

 

“It’s often ‘tacked on’ to more-intensive care,” he said.

 

However, another expert said the findings are not actually about the typical American’s final year of life — because many people with chronic diseases are suffering these symptoms long-term.

 

“I think the findings are very valid, but the conclusions about what they mean are not,” said Dr. Sean Morrison, who directs the Hertzberg Palliative Care Institute at Mount Sinai Icahn School of Medicine in New York City.

 

“I think you’d see a high prevalence of these symptoms if you looked at older adults’ last two years of life, or last three, or last five,” Morrison said.

 

The issue, he said, is that more and more Americans are living longer with chronic ills — from heart and lung disease, to painful arthritis, to Alzheimer’s disease. At the same time, the health care system has grown increasingly specialized and “organ-specific,” with less focus on primary care.

 

“We’re doing a very poor job addressing the multiple health conditions so many older Americans have,” Morrison said. “We’re focusing on treating organs, and not on improving people’s quality of life.”

 

Morrison said the health care system — including medical schools — needs to pay much more attention to palliative care.

 

Palliative care refers to therapy that focuses on easing physical or psychological symptoms, rather than curing a disease. Hospice care, which is intended for people with a limited time to live, is one form of palliative care.

 

Other forms, though, can start as soon as a serious medical condition is diagnosed, and given along with treatments aimed at battling the disease. Usually, a team of providers, including nurses, nutritionists and social workers, is involved.

 

But Morrison said that to many people, including doctors, “palliative” is synonymous with dying. So it’s often not offered, even if it’s locally available.

 

“Other research shows that the overwhelming majority of Americans do not have access to high-quality palliative care,” Morrison said.

 

The current findings are based on a periodic health survey of older Americans. Between 1998 and 2010, slightly more than 7,200 study participants died, and their family members were asked about symptoms their loved one had suffered in the last year of life.

 

Over time, problems like pain, depression, periodic confusion and incontinence grew more common. Other symptoms, such as fatigue and severe weight loss, held fairly stable.

 

Lorenz said part of the increase could be due to awareness. More doctors may be asking family members about those symptoms — which would be a good thing, he said.

 

But the fact that pain and other distressing symptoms are so common is disturbing, he said.

 

Morrison agreed. “This really is an indictment of the health care system,” he said. “And the public should be outraged.”

 

He and Lorenz suggested that older adults ask their doctors about any palliative services available for their symptoms — at any point in the course of a disease.

 

Medicare covers hospice care, and many Medicare Advantage plans pay for other palliative services, Morrison noted.

 

But relatively few research dollars, he added, go into palliative care. “We invest so much in finding disease cures,” Morrison said. “We should also be investing in making life better for the people living with these diseases right now.”

 

Reprinted with permission from Spectrum Health Beat.

Caregiver challenge: Needs double as end of life nears

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By Maureen Salamon, HealthDay

 

Reliance on caregivers doubles as people near death, and half of those caregivers—typically unpaid family members—report having no time for themselves, a new study indicates.

 

The research used a nationally representative sample of about 2,400 older adults in the United States. The study authors found that caregivers provided nearly twice the number of hours of help each week to dying individuals than to those not at the end of life.

 

“We were certainly aware when dealing with end-of-life care that families are mostly involved, but we couldn’t quantify that prior to this [research],” said study author Dr. Katherine Ornstein. She’s an assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

 

More than 34 million Americans provided unpaid care to an adult aged 50 or older in the past 12 months, according to 2015 figures from the National Alliance for Caregiving and AARP. Most caregivers are female.

 

Ornstein and her team drew from two nationally representative surveys in which caregivers in the United States reported their experiences caring for dying adults over age 65. The researchers contrasted this data with that of other caregivers providing ongoing care.

 

Older adults were classified as being at the end of life if they died within 12 months of the surveys’ completion.

 

The study found that dying adults had an average of 2.5 caregivers assisting them. Those near the end of life received 61 hours of help per week compared to 35 hours of help per week for older adults who weren’t at the end of life.

 

More than one-third of the end-of-life caregivers reported physical difficulty related to their duties. Just over half reported having no time for themselves. These figures were 21 percent and 40 percent, respectively, for other caregivers.

 

Nearly nine in 10 caregivers are unpaid, according to the study. For end-of-life caregivers who were spouses, nearly two-thirds reported receiving no help from family or friends.

 

“What we see now is, on average, there are 2.5 people helping someone at the end of life. You can imagine if they don’t have that, it’s much more difficult,” Ornstein said. “When spouses are serving as caregivers, the majority are reporting doing it alone and have the [most challenging] consequences.”

 

Barbara Coombs Lee is president of Compassion & Choices, a Washington, D.C.-based advocacy organization for patients’ rights and end-of-life issues. She pointed out that the caregivers surveyed in the new study didn’t necessarily know ahead of time that the person they were caring for was at the end of life.

 

This lack of awareness may have increased caregivers’ stress levels, she said.

 

“This told me the caregivers were probably struggling, not knowing this was an end-of-life situation. Our [organization’s] research indicates that uncertainty about decision-making is an inherent and extremely powerful source of stress,” Lee said.

 

“I would guess that many of these people didn’t know they were dying … so they pursued heroic, torturous, futile treatment,” she added. “Often the default decision [to continue treatment] increases the caregiver burden.”

 

Ornstein said she hopes greater awareness of the family burden of caregiving, especially at the end of life, comes from her research.

 

“We need to think about expanding access to palliative care services, which can help facilitate the delivery of supportive services to families earlier,” she added. “And we can see how we need to provide more paid family leave so families can provide the support we’re pretty much expecting them to provide.”

 

Lee agreed with the need for expanded access to hospice and palliative care.

 

“One of the big barriers to access to hospice is [an] information gap,” Lee said. “People don’t understand that hospice is appropriate to them in their journey in their illness. Palliative care utilization would go up if people had more candid conversations and were privy to information that physicians have but aren’t sharing.”

 

The study was published in the journal Health Affairs.

 

Reprinted with permission from Spectrum Health Beat.