Category Archives: Advance Care Planning

Yea or Nay on Medical Aid in Dying?

Hawaii has become the latest state to enable medical aid-in-dying, and  public opinion has been shifting more in favor of it in the past couple of years.  It’s still an enormously controversial subject and too often advocates on both the “pro” and “con” side shed more heat than light on it.  I wrote this blog piece for http://sixtyandme.com in hopes of providing a little light.

Spoiler alert: I am opposed to medical aid-in-dying. Not for religious reasons, or because it violates the medical principle of “do no harm” or even because of fear of the “slippery slope” that would harm the most vulnerable among us.

In short, it seems to me that this evolution is more of a striking and continuing indication of the sorry state of end-of-life care currently, than it is a rational health care solution for those suffering terminal illnesses.

You can read the piece here: http://sixtyandme.com/exploring-both-sides-of-the-physician-aided-dying-conversation/

It’s Pride Month. Don’t Overlook Elders

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.

 

 

 

 

 

 

It’s Healthcare Decisions Time! Focus on What You Want, Not on What You Don’t

Happy National Healthcare Decisions Day! Actually, it’s a whole week, starting April 16. The Day was created to remind all of us of the importance of  having a conversation with our family and friends about what kind of care we’d want, if we couldn’t speak for ourselves; and of having a written advance care directive and a health care proxy to speak for us.

And, in honor of the week, my book, “Last Comforts: Notes from the Forefront of Late Life Care,” is now available in all e-book venues – Kindle, Nook, iBooks, Kobo and more  — for the new low, low price of $5.99!

It’s a good week to think about your bucket list, too, which I wrote about in this Sixtyandme.com post.

Personally, I’ve never been a fan of the idea of coming up with a bucket list. At heart, and I’m sure I’m not alone in this, my clear preference is to focus on the less spectacular but just as satisfying smaller pleasures of daily life. And being grateful for the sometimes unexpected joys to be found there.

The photo accompanying this post is a good example of what I mean. I’m sure that seeing the Grand Canyon is probably atop lots of bucket lists. My husband and I were fortunate enough to be able to visit the South Rim a couple of years ago and of course, it was breathtaking. But here was my favorite moment (although the photo doesn’t do it justice). We had emerged from lunch around the same time as a heavy rain had stopped and there – so close you could practically reach out and touch it – was a rainbow. An unexpected, once-in-a-lifetime vision.

But my bucket list skepticism changed before I read about research conducted by the Stanford Letter Project at the Stanford University School of Medicine. As Dr. VJ Periyakoil, founder of the Stanford Letter Project, pointed out in a compelling opinion piece in The New York Times, it’s important not only to write down several things you’d like to accomplish, experience, see or share – and update your list from time to time as your feelings change – but also to share this with your physicians.

Why? Because they need to know what’s important to you if they are going to provide the best possible care for you, the individual.

If you’re having a problem identifying three to five main goals, Stanford has come up with a handy toolkit to help you. So share the list with your doctor. If you have a chronic illness, the toolkit advises, “Ask your doctor what you need to know about your health and illnesses and if they will prevent you from reaching your goals. Especially ask them about if any treatments they are proposing will prevent you from living your life as you wish to.”

Rethinking the bucket list question, I considered another reason why sharing your list with physicians is an excellent idea. The truth is, so much of thinking about advance care planning and preparing advance care directives has to do with what we don’t want. CPR, yes or no? Feeding tubes, yes or no? Mechanical ventilation, yes or no?

The bucket list, on the other hand, is a clear roadmap for our loved ones and physicians to understand what we do want. So it can be a lovely, positive complement to the admittedly sobering and potentially unpleasant work of envisioning our end-of-life care preferences.

 

An Early Valentine’s Day Gift! A Free Book!

Here’s my early Valentine’s Day gift to you! It’s a chance to win a FREE Kindle version of my book, “Last Comforts: Notes from the Forefront of Late Life Care.”

Enter before Feb. 14 and you could be among the 20 winners of this award-winning book about educating ourselves and our loved ones about the best possible care in our later years, to avoid medical crises down the road. It’s a book with a lot of heart and a lot of practical guidance, too!

The giveaway will only last from Feb. 1 to Feb. 14, so enter now. And if you already have the book, be sure to tell your friends!

Here’s the link: https://www.goodreads.com/giveaway/show/276947-last-comforts-notes-from-the-forefront-of-late-life-care

 

Food, Glorious Food — Until It Isn’t Needed

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.

 

“Meeting the Registrar”

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

 

Scary Things: Ghouls, Goblins…& Life Support

Happy Halloween, boys and ghouls! We’re surrounded by all things spooky and macabre right now, so it seems like a good time to ask: what scares you?

Truth be told, I found these creepy creatures shown here pretty scary when I saw them at the otherwise great Portland Art Museum in Oregon. Something about their fierceness and intent. But I’ll tell you what scares me more. It’s the idea of living-but-not-living; that is, having to rely on a ventilator, and artificial feeding, to keep me among the “living” if I’m otherwise close to dying. Like being in suspended animation.

It’s one thing to consider life-prolonging treatments in the abstract; even checking the boxes on an advance care directive or a POLST form can seem like an abstract exercise too. But  an outstanding article by Sara Manning Peskin, MD, recently brought home to me once again the grim specifics of these treatments and tore away anything abstract in considering them.

 Why is it so important to understand this on a gut level, rather than as a cerebral exercise? Over the past year, I’ve had the opportunity to speak to a number of groups about advance care planning.  What I’ve come to realize, though, is that for many people, it’s hard to think about what they might want, or not want, because they don’t understand the realities of what’s involved with various life-prolonging treatments. So I try to explain some of the highlights, with the important caveat that I’m not a doctor or an advanced practice nurse. Even so, I’m sure for many these are still abstract ideas.

That’s where Dr. Peskin’s article comes in. She writes about meeting a 56-year-old woman she calls Geraldine, and her family, in the hospital three  weeks after Geraldine had suffered a heart attack. Geraldine was on a breathing tube.

“We can place a long-term breathing tube in her neck and a feeding tube in her stomach,” she told the family, “but there are no cases in the medical literature of someone like her living independently again. The best we could hope for is a life of near-complete dependence.”

Her family decided that, because Geraldine was stubborn and exceptional in life – a fighter, they called her — they believed she would be exceptional in beating her prognosis too.

“For Geraldine’s family, the immediate fear of watching her die outweighed the unfamiliar pain of sustaining her on machines and watching her disappear in a long-term care facility,” Dr. Peskin writes. And so the breathing tube was placed in her neck, and the feeding tube in her stomach.

But, as Dr. Peskin explains, “immobility leads to complications: infection, blood clots and bedsores. Where tubes are inserted, bacteria can enter. Being immobile also put Geraldine at risk for pneumonia and urinary tract infections. “Like mosquitoes in standing water, infections proliferate when the body is still,” Dr. Peskin points out.

Blood clots resulted not only from immobility but also from Geraldine’s body having been inflamed and torn from the heart attack. Circulation slowed. “Pools of static blood dried into a thick paste in her blood vessels,” the doctor says.

A bedsore developed. As Dr. Peskin explains, if a bedsore progresses, first the skin becomes red, then its outer layer breaks down, then the inner layer does. Then, bone, muscles and tendons are exposed. This can happen in a matter of days.

But two months after the heart attack, Geraldine was stable enough to leave the hospital’s ICU and was transferred to a long-term care facility. She was in a persistent vegetative state, which means she did not respond to external stimuli.

The family still hoped that there would be a miraculous turnaround. But there wasn’t any miracle. Geraldine died of sepsis,  a life-threatening complication of an infection, after four months of care.

You can read the full article here:

A coda to the story: While Geraldine was still in the ICU, Dr. Peskin reports, another doctor asked if the family of another patient in that ICU could visit Geraldine to see what prolonged dying looked like. The family agreed; the visiting family subsequently chose hospice care for their loved one.

When you think about advance care planning, then, think about Geraldine. I think it’s also helpful to think not only about what you don’t want, but what you do want. It’s still an exercise, to be sure, because so often we truly do not control our end-of-life circumstances. But it’s good to have an ideal in mind.

(In case you’re wondering, those spooky creatures pictured here are Tupilak figures exhibited at the Portland Art Museum in Oregon. These were credited to an Inuit artist, circa 1960. In Greenlandic Inuit culture, these figures were made by shamans to be avenging monsters. They’d be placed into the sea to seek and destroy a specific enemy.)

Happy Halloween!

Magical Thinking in End-of-Life Issues

Recently I had a chance to see how the human heart and spirit can overrule the rational mind, even in hypothetical circumstances. At a local educational event  on palliative and hospice care, a woman in her 80s in the audience was attentive and engaged during the presentation. During the discussion that followed the presentation, she talked about how she wanted to look into becoming an organ donor.

But then, she asked the experts if her heart stopped and if she had decided to opt for CPR but it didn’t work, “Can’t there be a miracle?” In other words, before being pronounced dead, couldn’t there be some other way to revive her and enable her to live on? And would she be pronounced dead before her miracle kicked in?

We all want miracles, do we not? We want to have hope when all evidence points to the contrary. That’s why I found her question so poignant, so human. This woman, who had at first seemed to be a realist regarding the question of mortality – accepting it on an intellectual level – was at the same time wandering in the realm of magical thinking.

We’re all susceptible, truth be told. But there are a few things to keep in mind to avoid wandering into this realm ourselves.

I blogged about it for the website sixtyandme.com, and you can read it here:

Wishing you all a wonderful start to summer, this coming weekend!

Hard to Start That Conversation? Try Playing a Game of 32 Questions

You may be asking yourself, “Well, National Healthcare Decisions Day is coming up April 16, so what should I do to celebrate it?”

Okay, maybe you’re not asking yourself that question. Then again, maybe you don’t have to wait another couple of weeks to start having conversations with those closest to you about some serious subjects. Subjects like, what kind of care would be best for me if Ihad a serious illness? How do I feel about treatments and interventions like mechanical ventilation, feeding tubes and CPR?

It’s tough to start these conversations, of course, which is one reason why the majority of adults don’t do it. Or prepare advance care directives. But a Philadelphia-based company called Common Practice has come up with a way to help you with this, that’s clever, effective and fun. It’s a game you can play with two to five  players, called “Hello,” and it’s available on the company’s website for $24.95. And, no, I don’t have any connection or interest in this company.

I  had a chance to speak with Nick Jehlen, a founding partner of the company and lead designer of the game. What piqued my interest was this: underpinning what could be seen on first blush as a lighthearted approach to a weighty subject was in fact the result of a thoughtful and deliberative process of research, design and feedback.

Here’s how the game works. Each player gets a question booklet  with 32 questions (which you keep after you finish playing), and a number of “thank you” chips to give to other players if they say something you find particularly touching, helpful or insightful. You decide how to play: whether to limit the number of questions, or put a time limit on play. There are no wrong answers and really, no winners or losers. As the game designers point out, the most important rule is to listen.

Some sample questions:

In order to provide you with the best care possible, what three nonmedical facts should your doctor know about you?

Who haven’t you talked to in more than six months that you would want to before you died?

            If you needed help going to the bathroom today, who is the first person you’d ask to help you? Who would you never be able to ask?

            What music do you want to be listening to on your last day alive?

            What activities make you lose track of time?

            Write your own epitaph in five words or less.

One of the keys to the game’s effectiveness is that everyone has to answer the questions, so there’s a sense of sharing and no one (such as a person confronting a serious and/or life-limiting illness) is being “singled out” in the conversation.

“We wanted to create a sense of safety,” Jehlen said, noting that he has played the game “hundreds of times and my answers change. [The game] doesn’t force you into a corner. You can play it every year and see how you evolve.” He’s played it with his own parents, too, and said that they found it to be maybe a bit strange at first, but challenging and fun.

How the Game Evolved

Prior to developing the game, Common Practice’s business had revolved around designing tools to help people to communicate better in order to achieve greater workplace productivity and purpose.  When the founders started thinking about what ultimately became “Hello,” they spoke at length with hospice nurses, to learn more about what helps people to be resilient. One insight: families who had actually talked about death and dying were able to care for loved ones better than those who hadn’t.

They entered their game, then known as “My Gift of Grace,” in a design challenge run by the California Healthcare Coalition and were one of the winners. When they realized what an important project it was, and that it was the most meaningful work they had done, they decided to make it the focus of their business, Jehlen told me.

They did a Kickstarter campaign to raise money, and 440 people contributed. In devising the questions that would be part of the game, they queried their contributors for suggestions and reactions to sample questions. They were most interested in questions that generated more than a paragraph to answer. In the end, half of the questions in the game were devised by Common Practice; the other half came from backers.

About a year ago, they changed the name to “Hello,” because some of the feedback was that the name had religious overtones which made some feel left out.

Common Practice also makes “event kits” of the game available to groups of 25 to 50 people in health care settings, including hospitals and hospice agencies. It runs training and workshops for health care staff, aiming to encourage participants to feel more comfortable asking questions of their patients that are more, well, patient-centered.

How effective is this game? One measure: Research conducted at Penn State’s College of Medicine has shown that roughly three-quarters of the number of people who play the game subsequently go on to take some kind of advance care planning action, including creating an advance care directive.

Or, consider the response by health care professionals. After Nick Jehlen made a presentation about the game at the Mayo Clinic’s Transform conference in 2015, he invited attendees to play the game later on that afternoon. 150 people took him up on that offer.

 

 

Telling the Story of Your Life

I recently sat in on a terrific session at the 2016 Hospice Team Conference in NJ. about the importance of narrative in hospice care, presented by Jeremy Lees, LSW , chaplain and bereavement counselor at Holy Name Medical Center’s hospice, where I am a volunteer.

It started me thinking about how important it is that we write or record the story of our life — not only for our loved ones, but also for ourselves. To make sense of the arc of our life, our place in the world, our sense of purpose. And the best time to do this is when we’re healthy and vital!

Here’s my latest blog post from SixtyandMe, with some tips about how to get started.