“Life After the Diagnosis: Expert Advice on Living Well with Serious Illness” – podcast

Last summer, Steve Pantilat, MD, was interviewed by GeriPal, a blog (geripal.org) that focuses on geriatric medicine. Dr. Pantilat is a palliative care physician at UCSF. The interview occurred shortly after his book was published — “Life After the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers.”

We posted a link to the podcast of the interview on Brain Support Network’s Facebook page at the time, but I just got around today to listening to the podcast. Here’s are some highlights for me:

* “There’s this idea that somehow if we talk about what’s really happening, like how serious your prognosis is, or the fact that you have in fact a life limiting illness, that somehow that’s gonna take away hope and so, let’s not talk about it, we need to leave people with hope. But I worry that what that leaves people with is false hope. And that fundamentally, false hope is no hope. And if we talk about hope, we can really promote it and we can encourage it and to recognize that people have hope, even when we take care of people who are days away from the end of life, who are actively dying. They still have hope for things that are meaningful to them. And by talking about it, we can really encourage people to have hope, and to build on and to recognize, yeah, there’s hope for cure, sure. But there’s hope for a lot of other things that can coexist within the hope for cure, or alongside that hope, and we can encourage that.”

* “[We] talk about a good death but I don’t see death as good. I’ve seen it only as being sad and filled with grief and loss, and nothing we do seems to make it good. And the tragedy … I recently took care of a forty-two-year-old woman with an eight-year-old child in the hospital. She died in the hospital. People would say, ‘Oh, that’s a bad death,’ but you know, what was bad is that she died. And if she had died at home, it wouldn’t change the tragedy and the sadness and the grief and loss associated with her death.”

* The interviewer mentioned a story in the book about Sergei, an 80-year-old whose wife has dementia. Sergei hopes that the wife will get better. The interviewer asked Dr. Pantilat if this is false hope. “That I would say is false hope, we know that dementia does not reverse. …I realize that there was nothing I could say that would fundamentally change his hope in his wife getting better and I realize my role at that point was just to support him in that hope. … But, you know, there’s a time to push and there’s a time to accept and support and that was a time to accept and support.”

* “Realistic prognosis focuses hope. They give patients reliable and realistic information they can use to make decisions.”

* “[We] often give people this false choice, we say, ‘Do you want quantity of life or quality of life?’ And it’s somehow, if you want quantity of life, you have to accept all the possible interventions to attack your illness or to treat your illness. Every chemotherapy regimen, every procedure, and so on. And what we know now is that, in fact, there comes a time when some of those things not only don’t help you live longer but may actually ruin your quality of life. Chemotherapy in the last six months of life, for example. And that somehow if you want quality of life, it means you’re not gonna live quite as long. And what we know from Palliative Care, from the research, from the literature in our field, is that you can get both. And Palliative Care helps you live better and at least as long, maybe longer, but certainly no shorter, and you can live well and long. And part of my book, the point is to really get people to engage with and ask for and demand Palliative Care to live well and to live long.”

* He talks about using a word like “progress.” “Like progressive illness, your illness has progressed. ‘Oh, that’s great!’ No, that’s terrible. So I now think about this when I talk with my patients and I say, ‘Your heart failure is worse,’ rather than saying, your heart failure has progressed…”

* “Dignity is one of those very loaded words that’s in fact very personal. … And so we often use this word as a code for certain things. Like, respect your dignity by withdrawing interventions and what we should … If we’re gonna use that word, we [physicians] really need to embed it in what the patient and family think of as dignity and their interpretation of dignity and try to support that idea, not our own.”

* “If despite CPR, you die, your final moments will have been spent at the center of a tornado and while a team works on your body, your family will be watching the horror or be banished from the room. In either case, they won’t be with you, at your side, holding your hand.”

* “I think there’s a way in which people with serious illness think, ‘Why not? Why not just try it?’ And the evidence really suggests that when your illness is very advanced, to the point that you die of it, CPR isn’t really gonna help you. It’s not gonna help you at all and you’re gonna end up sicker. I think there’s a way that people think it’s like reset the computer. … But we all know that even if you survive CPR, you’re gonna be worse off than you were and there are implications, maybe not for you, I think this idea that somehow it’s suffering for the patient, I think is not right. We do CPR generally on people who have died. And so I don’t see that there’s a lot of added suffering to the person who’s died but there is this impact on their loved ones who might be at the bedside. And we have to remember what their experience is as well.”

* “[We] have to be careful to remember that all we’re saying is, ‘When you die, when your heart stops and you stop breathing, we will not try to revive you because it won’t work. We’ll let you die peacefully.’ But that has no bearing on all the other care that we will continue to provide. And we have to emphasize what we’ll continue in the meantime and all the care we will provide to make sure people are comfortable and well cared for so that we don’t see this decision about CPR at the very end as somehow implicating something more than it is.”

You can read the full transcript and listen to the podcast here:

www.geripal.org/2017/07/life-after-diagnosis-podcast-with-steve-pantilat.html

Dr. Pantilat was also interviewed at the Commonwealth Club of California last summer. A recording of that interview can be found here:

www.commonwealthclub.org/events/archive/podcast/life-after-diagnosis-how-live-well-serious-illness

And he was interviewed on KQED’s Forum show last summer. That recording is here:

ww2.kqed.org/forum/2017/08/01/living-well-with-chronic-illness/

Happy listening!

Robin

 

“Caring for the Caregiver: How to Prevent Burnout”

In mid-January 2018, CBC, a broadcasting network in Canada, aired a documentary called “The Caregivers’ Club.”  It is the club that no one wants to join.  This documentary is only viewable in Canada.  (I couldn’t find it on YouTube.)  The documentary follows three families coping with dementia.  I suspect that most of the documentary applies to all caregiving situations, not just those coping with dementia.

There are several good articles on the CBC’s website about caregiving.  These articles accompany the documentary.  One of the articles is on “Caring for the Caregiver: How to Prevent Burnout.”  Though the article is focused on dementia caregiving, most of it applies to all caregivers.

The author, an occupational therapist, shares these warning signs of caregiver burnout:

• You are not enjoying social activities and friends
• You find it a chore to leave the house
• You are more irritable and have mood changes
• It is difficult to concentrate and get things done
• You are having trouble sleeping
• Your weight may be affected (up or down)
• You feel anxious or depressed
• You have physical complaints such as headaches, pains
• You get sick more often, with both minor and major ailments

Most of the article is copied below.

Robin
—————————-

www.cbc.ca/cbcdocspov/features/caring-for-the-caregiver-how-to-prevent-burnout

Caring for the Caregiver: How to Prevent Burnout
Published about Sunday, January 14, 2018
CBC
by Nira Rittenberg

As Canada’s population ages, the number of caregivers who are involved in dementia care is on the rise.  The latest statistics from the Alzheimer Society show that there are 25,000 new cases of dementia every year and by 2031, the number of cases will increase 66% from today.

Individuals with dementia often require quite a lot of care, and it’s usually the family that provides it. CBC documentary, The Caregivers’ Club profiles three Ontario families as they struggle to care for their loved ones.

Caregivers for People with Dementia Burnout More Often
Caregiving is challenging, and people with dementia often require long care hours. This type of caregiving is associated with higher levels of burnout than non-dementia caregiving.  Research has shown that it is much more difficult to do than caring for someone with a physical disability.

For almost all carers there is the balancing act of family life, careers and other relationships. Some caregiver demographics, such as homosexual, Indigenous and caregivers of individuals with early onset dementia, may experience additional stressors in their roles. Each of these caregiver groups has challenges that are specific to their situation.

Early onset dementia caregivers are often in the phase of life where they are raising younger children and carry more of a financial burden. They may have not fully developed their caregiving skills and feel more unprepared for the task. Homosexual caregivers often have to deal with prejudice and lack of sensitivity in the healthcare system; while Indigenous populations may not have access to mental health services.

Stress Warning Signs
The stresses of caregiving can be insidious and often trace back to the caregiver neglecting their own mental and physical health. These triggers may happen slowly and make burnout hard to identify.

Some warning signs include:

•         You are not enjoying social activities and friends
•         You find it a chore to leave the house
•         You are more irritable and have mood changes
•         It is difficult to concentrate and get things done
•         You are having trouble sleeping
•         Your weight may be affected (up or down)
•         You feel anxious or depressed
•         You have physical complaints such as headaches, pains
•         You get sick more often, with both minor and major ailments

Caregiving Will Not Change the Course of the Dementia
Some caregivers feel the self-imposed responsibility that their efforts can somehow change the course of the illness by keeping the individual with dementia “happy and healthy.”  Many caregivers report that they end up feeling upset with the person they are caring for. Though they are aware that feeling this way is not rational, it makes them feel worse.

Many caregivers saddle themselves with unrealistic expectations of what they can handle on a daily or practical level. Money, resources and ability to manage may not be adequate and can make a caregiver feel impotent.  The lack of ability to control this situation combined with a complex health care system can be difficult and frustrating.

Fortunately, not all symptoms occur for every caregiver, and there is no timeline on when they will feel that things are not working.

How to Access Support for Caregivers
The good news is research has shown that support can make things easier for caregivers.

Interventions can come in different forms like receiving help to get things done and assistance with housework, bathing or other tasks.

The caregiver also needs support to deal with the stress of watching someone they care about deteriorate to help them cope with the emotional struggles that are part of the journey.

These supports can come from both professionals as well as peer caregivers. Every situation is different and supports should be built around need. There are a variety of services and resources that can help. The key is to find one that suits your family.

Reach out to your doctor or your local health agency. Find someone who will help your family to find what it needs to get the care, education and support to be both effective and healthy.

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Center and in private practice. She is the co-author of Dementia: A Caregiver’s Guide.

“Life Lessons From Dad” (Wall Street Journal)

This article is about a son and his wife caring for the son’s parents in the son’s home.  The parents were in their 80s.  The father had a diagnosis of dementia.  The author says:  “Caring for an ailing parent is a life-changing event. Beyond the sadness and suffering, the experience can teach caregiving children a lot about toughness, perseverance and especially love.”

On the Wall Street Journal website (online.wsj.com), there is a 4-minute video interview of the author.  The video can be watched at no charge, after an advertisement.

Here’s a link to the full article about “life lessons from dad”:  (the full article is viewable only if you make a payment to the WSJ)

https://www.wsj.com/articles/life-lessons-from-dad-caring-for-an-elderly-parent-1403886423

Life Lessons From Dad — Caring for an ailing parent is a life-changing event; beyond the sadness and suffering, the experience can teach us a lot about toughness, perseverance and, especially, love
By Dave Shiflett
28 June 2014
The Wall Street Journal

Robin

A revolution in health care is coming (The Economist)

This interesting lead article in the Economist magazine (economist.com) is about how we will all become our own doctors, leading a health care revolution.

Here’s an excerpt:

Better flow of medical data “is likely to bear fruit in several ways. One is better diagnosis. … A second benefit lies in the management of complex diseases. … Patients can also improve the efficiency of their care. … A final benefit of putting patients in charge stems from the generation and aggregation of their data.”

And a full link to the article:

www.economist.com/news/leaders/21736138-welcome-doctor-you-revolution-health-care-coming

Treating Behavioral Symptoms of Dementia Without Drugs (Next Avenue)

This article from Next Avenue delves into person-centered care, which focuses on treatments which have an impact without the use of medications. For individuals suffering from neurological conditions, small changes in the environment can lead to positive outcomes.

https://www.nextavenue.org/treating-behavioral-symptoms-dementia-without-drugs/


Most people think of dementia as affecting memory and cognition, and it certainly does. But some of the most distressing symptoms of Alzheimer’s or other dementias are behavioral and psychological.

“What takes a lot of families by surprise are the things like agitation, problems sleeping, getting up and wandering; sometimes people even become violent,” said Dr. Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association.

Some people exhibiting these kinds of behaviors have been treated with anti-psychotic drugs, which has sparked widespread criticism. And the Food and Drug Administration (FDA) has mandated a black box warning on such drugs with older adults with dementia; they are associated with an increased risk of death.

But there’s an alternative.

“A lot of these [behaviors] can be managed with interventions that are really behavioral in nature, that do not require medication,” Fargo said. Those interventions include reminiscence therapy, music and art therapy, aromatherapy and pet therapy.

New Recommendations for Dementia Care

The use of person-centered, non-drug treatments for people with dementia is one of 56 new dementia care practice recommendations issued in late January by the Alzheimer’s Association.

They are “aimed at helping nursing homes, assisted-living facilities and other long-term care and community care providers deliver optimal quality, person-centered care for those living with Alzheimer’s and other dementias,” according to a statement by the Gerontological Society of America (GSA). The recommendations can be found online here and will be published as a supplement to The Gerontologist, the GSA’s peer-reviewed journal.

Responding to Their Environment

Sheryl Zimmerman, a professor and gerontologist at the University of North Carolina at Chapel Hill, was one of three authors of The Gerontologist’s article on non-drug practices for people with dementia.

She said the behavioral and psychological symptoms that often accompany dementia aren’t just a product of the dementia-affected brain. “Some of those behaviors are due to the interplay of the person with the environment,” Zimmerman noted.

For example: things may be happening too quickly, which can be frightening. There may be a high level of noise or too much stimulation.

Negative reactions may be exacerbated by the typical losses of aging: “An individual who has trouble seeing, for example, may be easily startled and distressed by noises that are not clearly identifiable, leading to anxiety or agitation,” the study said.

But employing non-drug therapies can help the person with dementia have a better quality of life and allow caregivers to do their job. “And it avoids the potential likelihood of giving the person (with dementia) a medication that would sedate them,” Zimmerman said.

Evidence for Non-Drug Therapies

Zimmerman and her colleagues examined 197 articles describing scientific evidence on non-drug practices to treat behavioral and psychological symptoms of dementia.

They fell into these categories: sensory practices (aromatherapy, massage, multi-sensory stimulation and bright light therapy), psychosocial practices (validation therapy, reminiscence therapy, music therapy, pet therapy and meaningful activities), and what are known as “structured care protocols” (particular procedures for bathing and mouth care).

Some of what they found:

Aromatherapy

A number of studies have looked at the use of aromatherapy for agitation and aggression in people with dementia.

Overall conclusion: Mixed results. The positive outcomes with some patients may have been because they enjoyed the interpersonal and physical benefits of having cream rubbed into their hands, the study said. More large-scale trials are needed.

Massage

“Through tactile connection, a person living with dementia may feel comforted and cared about, especially in residential care environments where touch tends to be instrumental and task specific,” the study said. Massage may also be successful in combating the social isolation that can contribute to negative behaviors. And it may spur the body’s production of oxytocin, which can infuse a sense of reassurance and calm.

Overall conclusion: A “small evidence base” shows positive results in the immediate or short term. However, some people dislike massage; that may increase agitation for them. As with any therapy, success depends on whether it’s right for the person being treated.

Bright Light Therapy

Normal aging can prompt sleep disturbances. Dementia can further disrupt a person’s circadian rhythm, resulting in agitation and “sundowning,” an increase in confusion, irritability and moodiness as the day wanes.

Bright light therapy consists of using a special light fixture, light box or visor, or exposure to natural bright light.

Overall conclusion: Mixed results. It may have some benefit, but further research is required. Some studies found it may actually make agitation worse.

Pet Therapy

Pets, particularly dogs, have been used for people with dementia for decades. “Physiologically, quiet interaction with an animal can help lower blood pressure and increase production of neurochemicals associated with relaxation and bonding,” which may in turn reduce the behavioral and psychological symptoms of dementia, the study said.

In small studies, pet therapy has succeeded in reducing disruptive behavior and increasing interactions with others.

Overall conclusion: There is a “small and preliminary” evidence base for pet therapy, even when the pet is a robotic cat or dog. Understandably, pet therapy would not work well for people who are allergic or who have had bad experiences with animals in the past.

Bathing

Bath or shower time can be particularly upsetting for a person with dementia. It is “the personal care task associated with the highest frequency of behavioral expressions of distress for persons living with dementia,” the study said. Its intimate nature may cause embarrassment, especially if the person being bathed does not recognize the caregiver and does not understand what is going on.

“Years ago, in nursing homes, people used to be hosed down, if you will,” Zimmerman said. Through a protocol called “Bathing without a Battle,” developed at the University of North Carolina at Chapel Hill, those with dementia exhibit far less agitation and resistance.

Overall conclusion: Studies have shown positive results through relatively simple changes such as sponge baths in bed and creating a “spa-like” environment with music or calming sounds. More high-quality studies are needed for the best evidence, the report said.

Each One an Individual

The bottom line, researchers and advocates said, is that everyone is different. Like any older adult, individuals with dementia have their own preferences about their surroundings, their activities and their medical treatments. That’s the basis of person-centered care.

Most of the non-drug interventions have little potential downside. But it’s important to have guidelines, and those guidelines should be based on evidence, Fargo said.

“That’s why we undertook this effort to do a review of the literature, to find out what kinds of care have the evidence base behind it. And it’s important that we disseminate that to the community,” he said.