Tough choices

— When it’s time to move from home to assisted living

While 8 in 10 Americans ages 65 and older say they want to age in their homes, it’s not always possible when health declines.

Knowing when a loved one needs a more supportive environment, such as assisted living, continuing care retirement community or a nursing home, can be challenging. Though “aging in place” remains a cherished goal, seniors are fretting less about it these days, a recent Associated Press/NORC Center for Public Affairs poll found.

An expert in geriatric mental health offers some guidelines for knowing if is still realistic or if someone needs more care, whether through moving or a home visitation service.

Dr. Molly Camp is an associate professor of psychiatry at University of Texas Southwestern Medical Center in Dallas. In a center news release, she said there are five domains to consider:

Personal needs and hygiene: Basic self-care activities, including bathing, dressing and toileting, must be met. A person’s ability to get in and out of tubs and showers and their risk of falling should be considered.

Home environment: Consider the ability to handle basic maintenance and repairs, as well as access to electricity and water, a sufficiently sanitary living environment and how to avoid safety hazards, such as structural deficiencies.

Necessary activities: Assess whether your loved one can complete complex, essential tasks such as transportation, shopping, meal preparation, cleaning and using technology.

Medical self-care: Your loved one should be able to manage their medications, care for minor wounds and self-monitor for illness.

Financial affairs: Evaluate whether the person has the ability to pay bills on time, track other finances, avoid exploitation, and enter into binding contracts when needed.

Of course, Camp noted, may be able to help manage finances and home visitation programs may be able to help with chores such as cleaning and cooking.

Complete Article HERE!

End-of-life care considerations for LGBTQ older adults with Carey Candrian, PhD

AMA CXO Todd Unger discusses caring for LGBTQ seniors and addressing disparities during end-of-life care with Carey Candrian, PhD, an associate professor at the University of Colorado School of Medicine in Denver.

0:00 AMA Moving Medicine for June 21, 2022
1:04 What disparities affect LGBTQ older adults, specifically?
2:04 What is driving these disparities in LGBTQ older adults?
4:06 How have previous stigmas taken a toll on LGBTQ seniors mental health?
5:35 Why are LGBT older adults at particular risk for receiving inequitable end-of-life care?
8:17 How is end-of-life care different from other areas of health care where we don’t see these huge gaps?
8:43 What are the drivers of this discrimination?
9:53 What kind of data would be helpful—and how can it best be collected by care providers?
11:46 What do you mean by “breaking the script” when it comes to communication with LGBTQ older adults?
13:30 How would you like to see end-of-life care evolve and what do we need to do to get there?

Some people think they would rather die than have help brushing their teeth

– but care is not tragic

‘My personal assistants and I, live life at full speed’ (posed by models).

For disabled people like me, care can be brilliant and has enabled me to experience university, holidays abroad and nights out dancing with pals. There is nothing to pity in that


I’ve seen it so many times: the head tilt, the look of concern and sympathy. You would think I had just announced a family bereavement, rather than mentioned that, because of the nature of my disability, I need 24-hour care.

This response is not unusual. The thought of a relatively young person (I’m 27) needing care generates pity like nothing else. Behind the condescension, I suspect there lurks a specific dread: the reminder that, one day, you too could need care. The horror!

The thought of having care workers conjures all sorts of unpleasant images, including the idea of a life cut short and potential unreached. Care, to most people, is the bad thing that happens before you die. But to need care long before it becomes end-of-life-care signifies a failure of youth; the epitome of tragedy.

Well, I’m here to tell you that’s not true. For disabled people like me, care is brilliant, fulfilling and life-enabling. It is so good that lots of us are desperate to receive more of it, instead of wishing that we needed less. The choice is not between a life with care and a life without it, but between a life with care and no life at all.

There is a fundamental misconception about what care entails. People often assume it to be much more clinical than the reality. Yes, my personal assistants (PAs) dress me, wash me and take me to the loo, but they also come shopping with me, cook me tasty dinners and share a pint with me and my friends in the pub. We spend a lot more time laughing (usually at ourselves) than we do thinking about the bathroom (itself the site of much hilarity). Is this really what it looks like to live a tragic life?

The things that I have enjoyed and been most proud of would not have happened without good care. From experiencing university (the studying and the partying) to holidaying in far-flung places, my life has been made possible by the young women who help me. Without them, I wouldn’t have the countless warm memories of nights spent at the theatre, or gossiping and dancing with pals. It is impossible to conceive of being able to work without my PAs – I certainly wouldn’t have had the opportunities that led to me writing this column. But I have, and you are reading it, and I cannot see anything to pity in that.

Of course, relying so heavily on a team of care workers has its downsides, from recruitment to managing rotas, to just wanting to be alone sometimes. It’s hard. But life is hard for many people – yet no one would turn to someone who’s just been made redundant, for example, and say: “If I were you, I don’t think I could go on.” Some people seem to think they would rather die than have help brushing their teeth. It truly boggles the mind.

Many fail to see the possibilities that care creates – not to mention the friendships that flourish within the care relationship. My PAs, past and present, are some of my best friends – but even this sentiment can give rise to unwanted sympathies. People assume it means I can’t make friends elsewhere (for the record: also not true). My PAs are my friends not because they have to be but because we like each other. And because the bonds of trust, understanding and a shared lived experience are incredibly strong; often, they are the only ones who really see the effect inaccessibility and ableism have on my life.

Receiving care is anything but a tragedy. My PAs and I, live life at full speed. I defy anyone to look at us – really look at us – dancing round the kitchen or popping out for dinner, and feel sorry for us.

Complete Article HERE!

Supporting dignity at end of life


At the end of life, people may have to rely on others for help with showering, dressing and going to the toilet. This loss of privacy and independence can be confronting and difficult.

Now Australian occupational therapy (OT) researchers have interviewed 18 people receiving about how they feel about losing independence with , specifically their intimate hygiene, as function declines with .

The study aims to raise awareness of how to provide better care for people at the end of life.

Lead researcher Dr. Deidre Morgan, a Flinders University with 26 years of clinical experience, says the clear message is there are specific ways to provide assistance with intimate hygiene that may conserve or compromise a person’s dignity.

At its core, it comes down to effective two-way communication and providing opportunities for the person to influence how they receive care.

“Asking a person which parts of their intimate hygiene they want help with, which parts they want to do themselves, and how they want this help to be provided can boost a person’s and control over their care,” says Dr. Morgan.

The researchers, including OT experts from the Flinders University, Peter MacCallum Cancer Centre, Monash University and SA Government agencies, say the study is a vital reference for to raise awareness about their responsibilities to enable agency and even support partial independence.

“What we do and what we say can have a profound effect on a person’s dignity—especially if we are helping in intimate tasks like showering and going to the toilet,” says co-author Celia Marston, from the Peter MacCallum Cancer Centre in Melbourne.

“It is critical that we hear what a person wants the care to look like, or not look like.”

One participant, a 65-year-old professional woman with advanced cancer, told researchers that loss of agency and intimate hygiene dependency was so confronting that she couldn’t ask for the help she actually wanted.

This shows how important it is for carers to create opportunities for people to voice the help they want, researchers conclude.

The article, “Conserving dignity and facilitating adaptation to dependency with intimate for people with advanced disease: A qualitative study” has been published in Palliative Medicine.

Complete Article HERE!

The finality of saying yes

By Martie Moore

“I do not know that you understand what it feels like to say, ‘no’ to treatments, aggressive interventions or medications and ‘yes’ to the finality of death. It isn’t until you have to speak the words, make the decisions that the impact of your actions hit you like a tsunami of emotions.”

Those words were spoken over cups of tea that led to glasses of wine.

Sitting around the table were healthcare providers, leaders of palliative care, who had to walk the pathway they themselves had designed for others. The care plans were designed to ease the way into the final phase of living. Except all found the pathway was much harder even with in-depth knowledge and experience when it became personal.

I have always been a proponent of palliative care. I have designed palliative care systems for adult and pediatric hospitals. Palliative care defined by the Center to Advance Palliative Care (CAPC) is specialized medical care for people living with a serious (or chronic) illness. This type of care is focused on providing relief from the symptoms and stress of illness. The goal is to improve the quality of life for both the patient (resident) and the family.

Those with chronic diseases can use the guidelines of palliative care to aid in an approach that improves the quality of life for individuals for years. In my personal life, my mother-in-law was on a palliative care plan for more than 10 years. Her providers, friends and I worked together to address her needs. To weigh the risks, benefits and alternatives of each proposed medical decision.

The last few weeks of my father’s life, we were blessed that the hospitalist who cared for him in the hospital was also board certified in palliative care. We had to come to terms with his inability to not aspirate into his lungs when he ate and drank. We discussed the risks, benefits and alternatives of proposed care for him. A PEG tube with 24/7 care was discussed. I, being his designated decision-maker for healthcare, knew that was not what he would want but asked him anyway. I explained the procedure and what would happen if he decided that he wanted it. Before he was ill, he was clear about no tubes in his stomach. Now as I asked him again, he grabbed my hand and said, “Whatever you think is best.”

That is the moment that I will never forget. The decision that I was being asked to make was to either sustain my father’s life or make the decision that would end it. Sustain did not mean that he would not have complications, further deterioration of his health. It did mean that his total nutritional intake would be through the tube in his stomach. Because of the injury to his neck, he could not swallow fluids or solids without aspiration. The answer was to move him to palliative care or comfort care with hospice support.

I have spent my career as an advocate for palliative care. Championing that the right conversations occur before they are needed. I held the accountability for healthcare for my mother-in-law, and my parents. I had those right conversations beforehand with all three. In the space of under 20 months, I was faced with the reality of what it means to the decision-maker(s) and the circle of people that love them. Holding the right conversations beforehand, helped me to have a pathway to navigate when my emotions were raw. When I was trying to explain to others, the why of what was being done, I leaned into those previous discussions, to answer questions.

Looking back upon the kitchen table conversation, there was a theme that emerged like a brick being thrown through a window. The comment that you “do not know that you understand what it feels like to say, ‘no’ to treatments, interventions or medications and ‘yes’ to the finality of death.” You are saying, ‘yes’ to the finality of death.

What was not said, but understood: You will never forget that you said yes.

We, as healthcare providers, have worked hard to double check that advance directives are on file. We look for the POLST form upon admission. If the form is not completed, we work to get it done. We work hard to make sure that the right actions and forms are completed to ensure that wishes are respected.

Now we need to expand our actions from checklists to think about how we include the designated decision-maker(s) to understand the following:

  • They might feel guilty as they struggle to make decisions that respect their loved one’s wishes and say yes to the finality of death. (We are here to support you as you grieve. We will connect you to grief counselors.)
  • They might second guess their decision-making after their loved one passes. (We are here to talk and answer any lingering questions, even after their loved one is no longer with us.)
  • They might feel fearful that they will make the wrong decisions. (We are here to share our knowledge, until they gain a level of comfort and understanding.)

I have always promoted that we have the right conversations with individuals and families before care decisions are made. Today, I promote that we have the right conversations beforehand, but we understand that those conversations are just the start of many conversations as we journey together.

Complete Article HERE!

What is palliative care?

How is it different from hospice?

Palliative care tries to support a patient’s quality of life.


When most people hear the term palliative care, they look worried or confused. Introducing myself to patients and families as a palliative medicine physician, I commonly hear things like, “Does this mean I am dying?” or “I am not ready for hospice.”

I respond by acknowledging these common fears, but emphasizing that palliative care and hospice care are two very different things.

Hospice care is a Medicare-covered benefit for people whose doctors believe they are in the last six months of life, and who want to stop treatments targeting their disease – such as chemotherapy for cancer – to focus on comfort. In contrast, palliative care is appropriate for people at any stage of serious illness and is provided alongside treatments aimed at curing disease.

Palliative care specialists like me are experts in treating physical symptoms like pain and nausea. But just as important, we listen to patients’ stories and find out what is most important to them. We help make difficult treatment decisions and address the sadness and uncertainty that often accompany serious illness. We walk alongside patients and their families at a time that can be frightening and overwhelming, offering comfort, information, guidance and hope.

Palliative care recognizes that ethical and compassionate care for serious illness requires supporting the whole person in addition to fighting the disease.

Mounting evidence

The field of palliative care is still relatively new. In the early 1990s, research demonstrated substantial shortcomings in the quality of care for patients with serious illnesses. One 1995 study of nearly 5,000 people in the U.S. found that half of patients who died in the hospital experienced moderate to severe pain in their last days of life. More than half of the time, doctors did not know when their patients preferred to avoid CPR at the end of life.

These types of findings helped inspire the field of palliative care over the course of the 1990s and early 2000s. It began at a handful of hospitals as a specialty consult service working alongside primary teams – such as oncologists, cardiologists, surgeons and neurologists – to improve the experience of serious illness and ensure patients’ needs were met.

According to the State-by-State Report Card on Access to Palliative Care, which is compiled by researchers at the Center to Advance Palliative Care, only 7% of U.S. hospitals had a specialty palliative care service in 2001. Today, 72% of hospitals with 50 or more beds have a palliative care service, and palliative care specialists are increasingly available in other settings as well, including outpatient clinics, nursing homes and home-based programs. For example, it is now possible to see an oncologist for cancer treatment or a cardiologist for heart failure, followed by an appointment with a palliative care specialist who treats related symptoms such as fatigue and depression.

This growth is fueled in part by growing evidence of the benefits that palliative care provides for patients and families. Our research team at the University of Pittsburgh led a 2016 review of results from 43 randomized trials with nearly 13,000 patients – meaning that some patients received palliative treatment, and others did not. We found that palliative care was associated with significant improvements in patients’ quality of life and reductions in their physical symptoms one to three months afterward.

A woman in a hospital bed, in a hospital gown, smiles and pets a fluffy dog as another woman looks on.
Palliative care involves discussing what matters most to a patient’s quality of life, such as being able to care for their pets.

Importantly, palliative care was not associated with shortened survival, pushing back against a popular assumption that pursuing palliative care means “giving up” on fighting disease. In fact, one influential study found that patients with advanced lung cancer who receive specialty palliative care in addition to standard oncology care lived almost three months longer than patients who received standard oncology care only.

Palliative care is now recommended in many national guidelines as a critical component of high-quality care for serious illnesses. For example, in 2016 the American Society of Clinical Oncology recommended that all patients with advanced cancer receive dedicated palliative care services early after diagnosis, while also receiving treatment to target the disease. Increasingly, palliative care is viewed as an essential part of ethical and compassionate medical care.

Not the norm

One might suspect that an evidence-based service recommended by national guidelines would be available to everyone with serious illness. When it comes to palliative care, however, this is not the case.

Nationally, palliative care teams are vastly understaffed. Workforce shortages are projected to worsen in the future, as the U.S. population ages and therapeutic advances mean people can live longer with serious illness. Even now, with COVID-19 surges having caused as many as 154,000 new hospitalizations weekly and made other patients sicker because of pandemic-related delays in care, palliative teams are stretched to the limit.

Whether you or a loved one has access to palliative care may also depend on where you live and where you receive your medical care. According to the State-by-State Report Card, a hospital in New Hampshire is three times more likely to have a palliative care service than a hospital in Mississippi. Another recent analysis found that a not-for-profit hospital is two times more likely to have a palliative care service than a for-profit hospital.

A 2019 study found that palliative care consults were less frequent at hospitals that serve the largest proportions of Black and Hispanic patients. These structural inequities risk worsening known disparities in the care of serious illness.

Educating doctors

Patients and families can request palliative care, but palliative care specialists usually are brought in once the primary clinical team recommends it. Yet many physicians do not, either because they mistakenly equate palliative care with hospice or do not recognize the value that palliative care can bring.

One approach to expanding palliative care access is to enhance palliative training and support for every clinician who cares for patients with serious illness – an approach sometimes called “primary” palliative care. Another approach is to leverage newer care-delivery models, such as telemedicine, to expand the reach of palliative care specialists.

These solutions would require changing medical reimbursement and training models to make palliative care fundamental – for everyone.

Complete Article HERE!

For end-stage dementia, Medicare can make hospice harder to access

The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say

By Emily Harris

Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.

When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.

The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.

But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.

After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.

Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.

Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.

Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.

Jean’s experience isn’t an outlier.

Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.

Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.

The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.

Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.

For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.

Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.

“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director

Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.

But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.

Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.

So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.

In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.

“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”

CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.

The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.

Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.

Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.

Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.

“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.

Jean Bishop’s family agrees with that.

Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.

Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.

Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.

“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.

During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.

Complete Article HERE!