Category Archives: nursing homes

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.

 

6 Steps To Take for Better End-of-Life Care

I was honored recently to be asked by the Berkeley, California-based Greater Good Science Center to do an essay, based on my experiences as a hospice volunteer and reporting/researching my book. Here are the highlights:

* Educate yourself about the different key treatments for end-of-life care, so that you can make informed decisions.
* Start conversations with loved ones so that they are clear about your wishes for care.
* Understand the benefits of palliative care and hospice care and know when to ask for them.
* Learn how to communicate effectively with doctors and medical staff.
* Research nursing and assisted living facilities in your community, in case you need them.
* Advocate for better end-of-life care for everyone.

You can read the full essay here

You’re In a Nursing Home. Now What?

I’m a big believer in the benefits of person-centered culture change in long-term care settings like nursing homes, where the aim is to focus more on the feeling of “home” than on “nursing.” According to the Eden Alternative , a nonprofit organization that promotes, supports and teaches about person-centered culture change, currently there are 190 skilled nursing facilities on its registry, 45 percent owned and operated by for-profit companies and 55 percent by nonprofit, county and government sponsors.

But these homes still represent a small fraction of the total number of skilled nursing facilities in the U.S. What if you, or someone you love, must make the transition to a nursing home now?

Fortunately, many excellent resources are available to guide you in making your choice. Deeply buried in Medicare’s Nursing Home Compare website, for example, is an excellent 56-page booklet called “Your Guide to Choosing a Nursing Home or Other Long-Term Care.” Fewer resources are available to guide you about how to live well once you’re there, however.

That’s where Eleanor Feldman Barbera, PhD, comes in. A seasoned nursing home psychologist, “Dr. El,” as she calls herself on her website and blog, says that her goal is “to make long-term care a place I’d want to live when it’s my turn.” She is called in to work with residents if they are causing trouble – e.g., arguing with staff members or other residents, or refusing to take medications, or participating in rehab, or are depressed.

Her approach is one of empathy, pragmatism and humor. Sometimes it’s a matter of residents adjusting to the reality of not being able to do everything for themselves, she pointed out.

Generally, she advises having patience and reasonable expectations. “Come in with an open mind,” she said. “Try to partner with the team as much as possible.” While in person-centered homes your schedule revolves around you, your preferences and interests, that is not the case in conventional facilities, where schedules are set by the institution. So here’s one hint: be cognizant of the home’s schedule and when you need assistance, try to seek it before shift change times, when aides and nursing staff are particularly busy.

There’s more advice in Dr. Barbera’s book, “The Savvy Resident’s Guide: Everything You Wanted to Know About Your Nursing Home Stay But Were Afraid to Ask.”
In more than 20 years of doing this work, Dr. Barbera told me. she’s seen little movement toward culture change in long-term settings, although now people seem to at least be aware of the concept. “It needs leadership at the top that believes in it,” she said. “It needs a constant push in that direction.”

One thing that might spur change is the sheer size of the aging baby boomer generation. In Dr. Barbera’s view, boomers are thinking differently about their own late life prospects. Generally, she said, they demand more service, have higher expectations, are more litigious and feel freer to speak out when they perceive something happening that isn’t right. Perhaps they will want co-habitation with other elders, or inviting college students to live with them, she said.

Or, perhaps knowing about the existence of person-centered care alternatives, they will begin to insist that conventional nursing home operators begin to embrace its principles.

To find a long-term care facility near you, go to the Eden Alternative Registry

And if you want to get a better sense of how a nursing home works when it embraces person-centered culture change, do take the time to watch this 22-minute video, Perham: Welcome Home. Located in Minnesota, the home includes six “households” of 16 residents each.

“Just Shoot Me” Isn’t a Plan

The Leonard Florence Center for Living, Chelsea, MA
The Leonard Florence Center for Living, Chelsea, MA

How often have you shuddered at the prospect of being terribly frail, living in a nursing home, and then said to your spouse, your kids, your partner, your close friends, “If I ever get like that, just shoot me?” I’ll admit to having said that, myself, on a few occasions.

The fact is, at some point, most of us are going to need some kind of assistance at some point in late life. Boomers may not have the luxury that our parents did, of being tended by adult children or other family members. Families may live too far from one another to enable that day-to-day caregiving. Many boomers – including a sizable LGBT population – do not have children to depend on at all. And whether in future years there will be a sufficient number of skilled home health aides to assist us in our own homes remains an open question.

The good news is that in the course of researching my book, “Last Comforts: Notes From the Forefront of Late-Life Care,” I learned that there are viable alternatives to conventional nursing homes and that they focus more on “home” than on “nursing” in design, operation and management.

Sometimes they’re called “households” or “small houses.” The Green House is one of the better-known variations on the theme of alternative nursing facilities. (www.thegreenhouseproject.org) Instead of a nursing station dominating a floor, a kitchen and common dining and living areas cater to residents who have their own bedrooms and bathrooms. A floor – often called a “neighborhood” — might include 10 to 20 bedrooms. These homes are distinguished for their person-centered care. So, residents’ own preferences dictate their schedules – that is, they can awaken when they want, eat when they want, spend time how they want to. Aides may be referred to as “universal workers,” and are given more responsibilities (and training) than aides in conventional nursing homes.

The nearly 95,000-square-foot Leonard Florence Center for Living in Chelsea, Massachusetts, which has been open since 2010, is a case in point. (www.chelseajewish.org) It cares for 100 residents in 10 “houses” (its term for “neighborhood”) of 10 people apiece. Three of the houses serve people who need short-term rehabilitation. One of the houses serves people living with ALS; another serves people with multiple sclerosis (MS).

The building’s first floor is its “Main Street,” with a bakery, deli, spa and chapel; each house also has its own communal area for games, social gatherings and other events. Each house also offers made-to-order Kosher meals; menus are designed jointly with residents and staff.

There are roughly 15,500 nursing homes in the U.S. that serve about 1.4 million residents at any given time; “household” style nursing homes that embrace culture change currently represent a very small fraction of the total number of long-term care residences in this country. So the question that arises is: Can these models grow substantially over the next 20 years so that we will come to expect this level of care as the norm? The nonprofit sector has led the way in this arena. It’s time for the private sector, which accounts for two-thirds of the nursing facilities in the country, to pay attention.