Category Archives: caregiving

Advance Care Planning, baby boomers, caregiving, death and dying, dementia care, elder care, long-term care, patient education, wellness

Why It Matters to Talk About Values with Dementia Patients

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As relieved as we are about finally seeing the awful year 2020 in the rearview mirror, I’d say that one useful thing the pandemic has given us is an in-your-face awareness of mortality and the gravity of serious illness. And it’s given us permission to talk about it more freely.

But what about loved ones who may be newly diagnosed with dementia? As caregivers know only too well, dementia progresses to the point where ultimately those afflicted may not be able to think clearly, reason well or speak. They become increasingly dependent on others for their care. So, to honor these loved ones, to support them in the way they’d want to care for themselves and to make sure that medical professionals understand the best way to respect what matters to them, it is vital to ask the questions regarding future care when loved ones are still able to articulate their answers.

How do you even begin to discuss these life-and-death issues? Especially if loved ones are anxious about their health and their future, or resistant to the idea that anything is wrong at all? Before trying to talk about the pros and cons of specifics of what I’d call “the Big Three” — CPR, mechanical ventilation and feeding tubes – it’s important to talk about values first. One great source of advice for this is the <a href="http://(https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Alzheimers-English.pdf) which offers a “starter kit” for those caring for people with dementia, at various stages.

The starter kit stresses the importance of beginning with exploring what matters to loved ones, what they fear, what kind of setting they envision if they were at the end of life, how involved they want to be in their medical care and who they’d like to have around them. It also emphasizes the importance of keeping the talk simple. Its questions are clear and straightforward. Finally, it stresses how important it is that you convey that this process is an act of love and that you will be there to support your loved one, no matter what.

Understanding loved ones’ values provides the framework for future decisions as dementia progresses. Advance directives, and health care proxies (those who will be responsible for speaking for loved ones) should reflect these values.

Some Points to Consider About Artificial Nutrition

Of the “Big Three,” let’s focus here just on artificial nutrition (feeding tubes): Sadly, people in the final stages of dementia may not remember how to eat, or be able to chew and swallow. Artificial nutrition is one solution to this issue, but it is not without its own problems According to the American Academy of Hospice and Palliative Medicine, for patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increased suffering. How? For starters, it makes people feel bloated, nauseated, and/or develop diarrhea.

Experts say it’s better to offer a little food or something to drink, and if your loved one wants it, even a minimal amount, fine. If not, don’t force it. There are other ways to continue to nourish your loved one, if food and fluids are no longer an option.

A useful template of an advance directive for people with dementia, published by End of Life Washington, addresses the feeding-by-hand issue. It states, “If I accept food and drink (comfort feeding) when they’re offered to me, I want them. I request that oral food and fluids be stopped if, because of dementia, any of the following conditions occur:

• I appear to be indifferent to being fed.
• I no longer appear to desire to eat or drink.
• I do not willingly open my mouth
• I turn my head away or try to avoid being fed or given fluids in any other way.
• I spit out food or fluids.
• I begin a pattern of coughing, gagging or choking on or aspirating (inhaling) food or fluids.
• The negative medical consequences of symptoms of continued feeding and drinking, as determined by a qualified medical provider, outweigh the benefits.”

No doubt this is all a lot of food for thought (pardon the pun) for caregivers and loved ones alike. But it’s the hard work of discussing and documenting loved ones’ values and wishes that will be the foundation for the compassionate and appropriate care that loved ones deserve later on in the course of illness.

Wishing everyone a safe, healthy and happy 2021.

Advance Care Planning, baby boomers, caregiving, death and dying, elder care, hospice care, Medical Crisis, National Healthcare Decisions Day, patient education

Planning Ahead in the Time of Covid-19

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One way the coronavirus pandemic has upended what we think of as normal life is how we think about mortality.

How? First, while there’s still so much we don’t know about the virus, what’s clear is that it can, with startling rapidity, do fatal damage even to otherwise-healthy people. It might be a matter of just days or weeks between the time a person first experiences symptoms and the time that person becomes critically ill.

Second, the very sick patients in assisted living, skilled nursing facilities, or in hospital intensive care units must bear the burden of illness alone; visits from loved ones are prohibited. That means a loss of the comfort of being together through a harrowing ordeal.

Third, patients on ventilators must be sedated, and are unable to speak to their loved ones. So there’s no way to have any kind of conversations, much less talks about goals of medical care. Nor can nurses or doctors do what palliative care and hospice physicians have always done best, which is to listen to patients about their lives, their hopes and fears, and to assure them with their very presence that the patients are well cared for.

Fourth, because we cannot gather in groups, we cannot depend on the comfort of family and friends and the time-honored rituals of grieving at funerals or memorial services. Much has been written about the concept of complicated grief, and this pandemic will certainly require a whole new chapter.

This is the horrifying reality that we see and read about, day after day. So it seems to me that this National Healthcare Decisions Day takes on more of a sense of immediacy than it may have in the past. That is, now is the time to think about what kind of care we’d want if we could not speak for ourselves; discuss it with family; get it in writing; and designate a health care proxy.

Of course, it is still true that it’s impossible to decide what kind of treatment you’d want, or not want, if you don’t understand what these treatments entail.

Let’s talk about ventilation, as an example. The best article I’ve read about the why’s and how’s of ventilation is one by Daniela Lamas, MD, a critical care physician at Brigham and Women’s Hospital in Boston and I urge you to read it.

Before Covid-19, my advance care plan said “no thanks” to it. But it seems key to saving the lives of some extremely ill Covid-19 patients and I would not refuse it if I had the virus.

What Dr. Lamas does not mention, though, is that typical time on the ventilator has been longer, on average (up to two weeks or even more) for Covid-19 patients than it has been in conventional uses. That in itself can lead to possible lung damage as well as emotional and psychological issues for recovering patients. Nor does she mention the sad fact that being on a ventilator does not guarantee survival. While it’s still too early to say what percentage of Covid-19 patients do survive ventilation, a large study on that, done by the Intensive Care National Audit & Research Centre in London, found that just 33 out of 98 ventilated patients in the U.K were discharged alive.

So there’s plenty to think about on this National Healthcare Decisions Day. But, hey, we’re home, we’ve got some time on our hands. Pour yourself a glass of wine, or something stronger, and talk it over. And if you need a little guidance getting started, here’s a great resource.

baby boomers, caregiving, dementia care, elder care, home care, long-term care, Mental health, patient education

For the Skills We Never Learned in School

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Did you know that today 20 million family caregivers regularly perform a range of tasks for family members or friends? That’s according to AARP. The fact is, many of us are – or will become – caregivers, and that most of us have never been trained to do some of the often complex tasks that will be needed.

Fortunately, there’s more and more online help available to caregivers. So, in honor of National Family Caregivers Month, here’s my latest blog post for Sixty and Me about some of the instructional videos available now:

baby boomers, caregiving, culture change, dementia care, elder care, home care, hospice care, long-term care, nursing homes, patient education, wellness, workforce education

A Virtual Walk in Others’ Shoes

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It’s such a topsy-turvy world right now that if you’re like me, it might take more than a little time spent viewing cat and puppy videos to elevate your mood. So I’m glad to share the story of Embodied Labs.

When I think about the future of health and wellness care for elders, one looming issue is how we can attract a broad and well-trained workforce to understand and help us through a gauntlet of serious illnesses or chronic conditions. So it is enormously heartening to learn about a group of young professionals who have dedicated themselves and their business to this work.

If compassion and kindness are rooted in the ability to “walk a mile in someone’s shoes,” Embodied Labs – which didn’t exist until 2016 — gives that dictum the ultimate technological boost. In short, it sits at the intersection of health care training and virtual reality storytelling.

Embodied Labs is a for-profit corporation, but it is very mission driven, according to Erin Washington, co-founder and head of customer experience. “We’re helping to build the world we’d like to see when we’re older,” she told me, adding that “we don’t consider ourselves a VR [virtual reality] company. We’re using VR because it’s the best solution to achieving the outcomes we’re aiming for.”

Washington’s professional background is in curriculum development. Carrie Shaw, CEO and founder, got her Master’s degree in biomedical visualization (which was once called medical illustration) in 2016. But it was their experience as family caregivers that provided the impetus for creating Embodied Labs.

Shaw tells the story about how she became a caregiver for her mother, diagnosed with early onset Alzheimer’s, and who also struggled with macular degeneration. She created a tool – a simple pair of eyeglasses with patches in two different places – to give her mother’s aides a sense of what it was like to see the world from her mother’s perspective. What if you could use science, storytelling and virtual reality to convey the experience of an aging person? Would that help health care providers, be they professionals, direct care workers or family members, become more effective and better at communicating, in their caregiving efforts?

Embodied Labs uses film combined with interactivity that literally enables a person to walk in the shoes of a person with serious health issues. So far there are three “labs” available to the company’s subscribers: “Alfred,” a 74-year-old African-American man who suffers from macular degeneration and hearing loss; “Beatriz,” a middle-aged Latina woman who has been diagnosed with early Alzheimer’s disease; and “Clay,” a 66-year-old veteran who has been diagnosed with Stage IV lung cancer and faces end-of-life issues and participates in hospice care.

Voice interaction is one element in the Beatriz Alzheimer’s lab. At one point, a person “embodying” Beatriz is asked to read a few sentences; but the words come out garbled and make little sense. It conveys what it might feel like to try to communicate but to be unable to express what you mean.

For the Clay end-of-life lab, Washington’s research included spending two days in a hospice facility, shadowing members of the hospice team. The lab’s credits list 75 people, including actors, those who worked in production, post production and subject matter experts.

Creating a lab is a research and labor-intensive process. Once a topic is decided upon, staff members talk to subject matter experts as well as family members, then decide on learning outcomes they want to achieve. All of that goes into script writing. Then the film is produced.

The Alfred lab, the company’s first, was created by an interdisciplinary team, with content experts from the University of Illinois Chicago, University of Illinois Urbana Champaign, Wake Forest School of Medicine and North Carolina School of the Arts, with representative input from students and experts in the fields ranging from biomedical visualization to geriatrics and health informatics systems. (A white paper detailing the impact of the lab on 200 second-year medical students at the University of Illinois-Chicago in October 2016 is available on the company’s website.)

At first, the company’s subscribers were mostly in academia. But now it has long term care and home health care companies on board. They’re also in talks with nonprofit organizations and with individuals who do corporate training; public libraries and Alzheimer’s groups represent other potential subscribers.

Looking ahead, Washington believes that in 2019 virtual reality will be more available and affordable for consumers, which could be a boon for family caregivers. And while Embodied Labs is focused on aging issues now, the company is looking at experiences of other vulnerable populations too.

“We try to explore difficult subjects, not skills-based training,” Washington said.

So far, the company’s labs have focused on what happens to a person in his or her home setting. The next lab will focus on the transition from living at home to a skilled nursing facility. It will likely include such elements as difficult conversations, the family dynamic, how long-term care can meet a need, what’s different about an institutional setting.

Washington told me that “I would have laughed three years ago if someone had said you’d be starting a company.”

And I’d say, we should all be glad that they did.

Advance Care Planning, baby boomers, caregiving, culture change, elder care, LGBT issues, long-term care, nursing homes, patient education

It’s Pride Month. Don’t Overlook Elders

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Because June is LGBT Pride Month, I wanted to talk about an issue that rarely gets the attention it deserves. It certainly has not been raised in the midst of the discussion following the Supreme Court’s decision over a baker’s right not to bake a wedding cake for two men.

The fact is, when advanced illness strikes, elders who are gay, lesbian, bisexual, transgender or gender non-conforming face more challenges than their heterosexual peers. They are likely to have more complex health conditions than their heterosexual peers, made worse by postponing or not seeking care. Social isolation is a major issue as LGBT seniors are three to four times less likely to have children, twice as likely to live alone and twice as likely to be single. And they may be in poorer financial straits. Going back into the closet out of fear of neglect, disapproval or abuse, is not uncommon.

Their fears are not unfounded. In Spring 2011, six organizations who advocate for elders and for the LGBT population published a study: “LGBT Older Adults in Long-Term Care Facilities: Stories from the Field.”  Among the highlights: Only 22 percent said they could feel open about their sexual orientation with staff at a nursing home, assisted living or other long-term care facility. Of those who lived in long-term facilities, or cared for those who did, the most frequently reported problem was negative treatment from other residents, followed by verbal or physical harassment by staff. Moreover, 51 percent reported staff refusing to provide basic care (such as toileting, bathing or feeding.

Some respondents shared a litany of sorrows and stories of lives derailed,  couples separated by family members who had legal authority over the facility resident; feelings of loneliness and isolation because of disapproval by other residents or staff; having aides attempting to get people to “repent” for their sins; choosing to go back into the closet for fear of neglect or harm.

For those living with HIV, there are associated issues to worry about, including cardiovascular disease; cancer (non-AIDS); liver, kidney and neurological diseases; osteoporosis; and frailty. Up to 30 percent of people living with HIV have abnormal kidney function, which, untreated, can be fatal.

And if  contending with serious illness is a challenge for gay and lesbian people and those living with HIV, it presents even more hurdles for transgender individuals. Owing to a combination of mistrust in the health care system and experience of rejection, discrimination or simple lack of medical knowledge by health care professionals, transgender individuals are at a higher risk for long-term diseases.

But in the midst of this sorry state of affairs, many people and organizations are working to make LGBT elders’ lives better: to make them feel more welcome in senior housing and long term care settings; to train direct health care workers to treat them more equitably; and to address their needs with expertise, kindness and compassion.

One example is Garden State Equality (GSE), a large LGBT organization in New Jersey, where Bianca Mayes, Health and Wellness Coordinator, heads the organization’s  Pledge & Protect program. The program is designed to educate all health care providers, including nurse practitioners, doctors, therapists, dentists and other direct service providers, as well as staff in long-term care developments. It also urges service providers, organizations and long-term care facility owners to pledge their commitment to advancing equitable treatment.

Three levels of training are offered, and training covers four general elements: an exploration of gender identity terminology; an overview of historic and current discriminatory practices; general health care disparities and needs (lack of insurance, transportation, poverty, homelessness, lack of legal protection, lack of cultural competence); and recommendations, including ways to design intake forms to be inclusive.

Why focus on intake forms? They are a person’s introduction to a care setting and they can either make that person feel welcome, or alienate and intimidate him or her. Garden State Equality has designed a template for an inclusive intake form, which it shares with trainees. (You can contact mayes@gardenstateequality.org for a copy.) That has been particularly well-received because, as Mayes pointed out, the intake form “is their Bible.”

Mayes told me that “People want to do the right thing; they just don’t know how.” For example, most people – LGBT or heterosexual — aren’t asked about their sexuality, orientation, history or gender identity. She stressed that “if you apply these practices to everyone, it’s not uncomfortable anymore.”

Mayes started implementing the program in November 2017. It has reached more than 125 health care professionals. GSE has also sent out information to seven sites in two counties in New Jersey. This coming weekend, Garden State Equality and the Green Hill senior living development, will hold a one-day LGBT Senior Housing and Care Expo that will include speakers, panels, vendors and a networking lunch. It will be free to the public. This summer GSE plans to host 10 focus groups serving all 21 counties to help produce a statewide needs assessment.

GSE estimates that there are some 100,000 LGBT men and women over 55 living in New Jersey. Mayes’ biggest hope is that more health care providers will reaching out to the LGBT community.

“They’re not necessarily going to come to you and their needs are dire,” she said.

 

 

 

 

 

 

baby boomers, Book Reviews and News, caregiving, culture change, elder care, Medical Crisis, patient education, wellness

On the Radical Power of Conversations

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When you’re sitting and waiting in your doctor’s exam room, are you thinking of yourself as a revolutionary? Victor Montori, MD, wants you to.

Dr. Montori, physician and researcher in the science of patient-centered care at the Mayo Clinic, has spent considerable time addressing other physicians and physician groups about the failings of what he calls “industrial health care.” That it fails to notice patients – in the sense of not listening to patients, not understanding nonmedical events in our lives, not paying attention to what we value most. That it standardizes practices for patients like this, rather than caring for this patient.

But in short, he believes it is time for a patient revolution led not by physicians but by the public. Health care reform – itself no easy feat to accomplish, much less debate – is not enough, he says: “It is time for a patient revolution not only because it has patient care as its goal but also because it believes citizens — healthy people, patients who are not too sick to mobilize – must lead the way.”

If there is a manifesto for this nascent movement, it is Dr. Montori’s book Why We Revolt. The book’s essays describe what is wrong with our health care system, how it has corrupted its mission, how it has stopped caring. It does not get into the weeds of national or state public policies, or explore alternatives to the kind of financial incentives that help perpetuate our current system, but it does propose “a revolution of compassion and solidarity, of unhurried conversations and of careful and kind care.”

A few nuggets from the book:

“If completely successful, care should enable patients to be and do, minimally hindered by illness and treatment.”

“What actions to take depend on the patient situation, the options available and what patients value. For most people, the situation they face is never simply medical.”

Minimally disruptive care focuses on “advancing the human situation of each patient with the smallest possible health care footprint on their lives. It calls for patients and clinicians to shape care to respond well to each patient’s situation in a manner designed to fit easily within chaotic lives.”

“Shared decision making is an empathic conversation by which patient and clinician think, talk and feel through the situation and test evidence-based options against the patient’s situation. [It] is a human expression of care.”

“Care is a fundamentally human act, one that manifests in the dancing art of conversations…A revolution of patient care must harness the power of conversations.”

In 2016, Dr. Montori founded The Patient Revolution, a nonprofit organization whose mission is “to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.”

The Patient Revolution is a multidisciplinary team of collaborators with backgrounds in clinical practice, clinical research, design, health policy, and storytelling. The team, which has spent more than 10 years developing tools and programs to help patients and doctors communicate better, have done extensive work in shared decision making and minimally disruptive medicine.

I spoke with Maggie Breslin, director of the organization, who was also part of that team at the Mayo Clinic. She said that the Patient Revolution’s aim “is for patients, caregivers and communities to drive change. It feels like what health care is supposed to be about.”

The team’s focus right now is on reaching out to individuals at the community level. Currently they are partnering with communities in Minnesota, to co-develop issues around health care access. “It’s still early days,” she noted.

Useful Communication Tools

It’s said that political campaigns are conducted in poetry, while governance is conducted in prose. The same might be applied to the Patient Revolution. While Dr. Montori may have the soul of a poet, the organization’s website offers very practical prose guidance to help us navigate our conversations with our physicians.

For example, here are five questions they encourage you to think about, write responses to and practice how you’ll ask them:

I want to talk about…

It is important to me because…

It might help you to know…

I want this conversation to lead to…

I’m nervous this conversation will lead to…

Also useful are tools to help you frame that conversation with your doctor by talking about your life and your values. For example:

What is one nonmedical thing about your life that you think the doctor should know?

What is one thing your doctor is asking you to do for your health that is helping you feel better?

What is one thing your doctor is asking you to do for your health that feels like a burden or feels harder than it should?

Where do you find the most joy in your life?

As the late poet, feminist and civil rights activist Audre Lorde wrote, revolution is not a one-time event. But if you’re starting to feel more like a health care revolutionary now, and you want to find ways to advance the movement in your community, you can find ways to get involved at http://patientrevolution.org. You can also order Dr. Montori’s book there.

 

 

Advance Care Planning, caregiving, death and dying, elder care, long-term care, nursing homes, patient education

Food, Glorious Food — Until It Isn’t Needed

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We’re in the midst of holiday season, and for many of us that means family events, gatherings with our friends and other celebrations. And of course it means lots of eating. An abundance of goodies that are sweet, savory and everything in between. That’s no surprise, considering that in our culture, food is one of our basic expressions of love. It’s one way we nurture each other and connect with each other. It’s comfort.  A chef I met last year summed it up so clearly. “All I ever wanted to do,” he said, “was to feed people and make them happy.”

For those who are nearing the ends of their lives, though, food not only becomes less and less of a pleasure but also less and less necessary. That’s a hard concept to wrap your head around and even harder to confront when you see this happening to someone you love. A person’s lack of appetite is a powerful and unwelcome symbol of decline, and a harbinger of the loss we will soon experience. If only Mom or Dad would eat, you might think, they could get some strength back, feel better and slow the progression of illness.

As a result, there is a giant misconception that the dying suffer terribly if they don’t eat or drink anything; that they will die of starvation or dehydration. Further, that people responsible for their care are cruel and inhumane if they do not feed the ill, or at least give them fluids. But when a person who is terminally ill stops eating, he or she cannot process food and fluids. Forcing the person to eat does not help that person to live longer, feel better, feel stronger, or be able to do more.

When a man I’d been visiting for a several weeks in a nursing home recently reached that point, his sister poignantly asked me, “Can’t we get them [the nursing home] to give him a feeding tube?” Of course she didn’t want to see her brother steadily becoming weaker and weaker. Of course she didn’t want to lose him. She believed that he would get some strength back if only he would eat more. But it wasn’t lack of nutrition that was causing his decline; it was the cancer.

Her brother’s advance care directive, in fact, called for no artificial nutrition. The fact is, at that point artificial nutrition and/or hydration makes people feel bloated, nauseated, and/or develop diarrhea. It does not relieve suffering. Here’s what the American Academy of Hospice and Palliative Medicine has to say: “For patients near the end of life, artificial nutrition and hydration is unlikely to prolong life and can potentially lead to medical complications and increase suffering.”

It’s better, the experts say, to offer a little food or something to drink, and if your loved one wants it, even a minimal amount, fine. If not, don’t force it. There are other ways to continue to nourish your loved one, if food and fluids are no longer an option. A light, soothing massage. Playing favorite music. Or just sitting quietly, holding hands, offering your presence and your love.

Addressing Nutrition in Advance Directives

It’s important to address the issue of nutrition in your advance care directive. It may not be enough just to say “yes” or “no” to artificial nutrition and hydration, though. Recently I came across a useful document about this, published by End of Life Washington. It addresses the issue of feeding-by-hand, which could be an issue in long-term care facilities caring for people with advanced illness and/or dementia. (And it certainly underscores the importance of documenting the advance care goals and preferences of people with dementia early in their diagnosis.) You can read the full document here.

At the heart of it, the document states, “If I accept food and drink (comfort feeding) when they’re offered to me, I want them. I request that oral food and fluids be stopped if, because of dementia, any of the following conditions occur:

  • I appear to be indifferent to being fed.
  • I no longer appear to desire to eat or drink.
  • I do not willingly open my mouth
  • I turn my head away or try to avoid being fed or given fluids in any other way.
  • I spit out food or fluids.
  • I begin a pattern of coughing, gagging or choking on or aspirating (inhaling) food or fluids.
  • The negative medical consequences of symptoms of continued feeding and drinking, as determined by a qualified medical provider, outweigh the benefits.”

This document does not replace your advance care directive, but it is a supplement to it. This organization also has a detailed general advance care directive as well as an advance care directive for those with Alzheimer’s or other forms of dementia available on its website. They’re worth a look.

In the meantime, I wish you a bountiful and joyful holiday season, filled with precious times with everyone you love.

 

Advance Care Planning, caregiving, death and dying, elder care, long-term care

“Meeting the Registrar”

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I recently came across this short poem on Twitter; it was written by a 99-year-old woman, a former nurse herself. I thought it was so wonderful that I’ve now used it several times to introduce my talks about late-life care and advance care planning. Since people have been requesting copies, I thought I’d share it here. What do you think?

Meeting the Registrar

As I would like to leave at ease

No intravenous feeding please

No pump imparting partial life

No last ditch using of the knife

When coma comes just let me slide

Unhindered to the other side

I want no plastic tubes to mar

My meeting with the registrar