Compassionate, informed advice about healthcare decision making

Archive for the ‘Advance Care Planning’ Category

“If I had a daughter, I wouldn’t be in this nursing home!”

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The old lady was stuck with three sons. And because of this — in her mind — she was stuck in a nursing home.

Her sons visited. They met with the nursing home staff to make sure their mother’s needs were met. They were as good of family caregivers as I had ever seen in my years as a nursing home chaplain. But, more than once, she said, “If I had a daughter, I wouldn’t be in this nursing home.” The notion seems a bit old-fashioned in today’s world, where gender equality is such an important issue.

Well, it turns out she might have been correct.

A study reported in the current issue of the Journal of the American Geriatrics Society (JAGS) found that a patient was more likely to die at home (as opposed to in a hospital or nursing home) if you had more family members… especially more daughters.

The burdens of a family caregiver

Being a family caregiver at home is a tremendous burden. In the JAGS study, the average number of caregiving hours in the last month of life provided by the family to someone who dies at home is 210. For those who die in a nursing home or hospice inpatient unit, it is 81.

Interestingly, the emotional burden for families is highest when the patient dies in a hospital and lowest when they die at home. Perhaps the transfer to the hospital in itself is a great emotional strain. Guilt about NOT being able to take care of the patient at home must also be a factor. And though providing hands-on care can be a physical burden, it may give the caregiver the self-satisfaction that they are doing their best. The caregiver feels more in control.

What about the daughters? Why does having daughters make it more likely to die at home? Unfortunately, the study did not tease out why, but we can guess.

Right or wrong, the cultural norm in our society is that nurturing and caring for the young and elderly are duties more often performed by women. Yet, I have witnessed so many men who admirably performed caregiving duties to their elderly parents that I know men can be great caregivers. But in these cases, the men usually stepped in because there were no women available.

Who’s going to take care of mother?

Hank’s mother, Charlotte, after her move to Colorado, with her namesake great-granddaughter, Lia Charlotte

I saw this “Who’s-going-take-care-of-mother?” question play out in my own family. Mom had lived for years independently in a retirement facility in Tampa before moving into assisted living. My brother, sister, and I took turns visiting our mother. I like to think we each took about the same amount of time away from our work and families to serve as long-distance caregivers.

As our mother’s dementia progressed, it became clear that we needed to move her to a facility closer to one of us. We each visited memory care units near our homes in Tallahassee, Boulder, and Northern Virginia. Each of us was willing and able to become “the caregiver.” We weighed the quality and cost of the facilities we had found.

After we all had done our due diligence, my sister declared, “I want to do this. I want mom to come to Colorado.”

I called Janice last week to see if my memory of this decision-making process was the same as hers. “Yes,” she said. “I knew you and Dennis were quite capable of caring for our mother, but I was her daughter. There is a special bond between mothers and their daughters.”

And that was that.

“She would never want to be kept alive like this.” The Benefits of Time-Limited Trials

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The conversation started innocently enough. It was thirty years ago (in an age before cell phones) at the nursing home where I served as chaplain. The sister of one of our patients needed to use a phone. The Assistant Director of Nursing invited her into the office down the hall from the patient’s room. The frail old lady hung up the phone when she got a busy signal (this was also before call waiting and voicemail).

In the quiet, while she waited before dialing again, she told the nursing supervisor, with great sadness, “My sister would never want to be kept alive like this.” “Like this” meant in a nursing home, on a feeding tube, and nonresponsive. The wise and compassionate Assistant Director of Nursing responded, “You know, you can stop the tube feedings if you feel that would have been her wish.”

Over the next days, the patient’s sisters and son met with the doctor and our nursing home care team. The family decided to withdraw the feeding tube and let the patient have a peaceful and natural death — and so it was. But this painful decision – and the patient’s slow, prolonged death – could have been avoided.

It could have been done differently

The lady had a stroke, was unconscious, and couldn’t swallow. The hospital physician said she needed a feeding tube and that was that. What if that doctor had said, “We can try the tube feedings for a little while, say thirty days, and if she doesn’t improve, we can stop the artificial feeding and let her die peacefully.” So much suffering could have been avoided if a “time-limited trial” of the feeding tube had been offered to the family.

My mind went back to this experience after recently reading a great piece by Paula Span in The New York Times, “I Need to Know I Tried” in her ongoing series “The New Old Age.” Reporting on a research study conducted in Los Angeles, she explains how time-limited trials offered to families of critically ill I.C.U. patients had many benefits. The length of stay in the I.C.U. was shortened, fewer patients had prolonged deaths, and the families felt better about their decision-making.

This new research confirms what I have known all along. In my view, there is no downside to a time-limited trial.

Could COVID Be the New “Old Man’s Friend”?

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Here’s the question: Should a nursing home resident with dementia get the COVID-19 vaccine?

There is no question that nursing home residents are at a high risk of dying should they get the coronavirus. That also goes for the underpaid and overworked staff who care for these vulnerable patients. One might think, “Of course, vaccinate them all.”

Not so fast.

I started thinking about this after reading a recent article from the bioethics think tank The Hastings Center, “Too Taboo to Contemplate? Refusing COVID Vaccination for Some People with Dementia.”

Just a month ago I wrote a blog post, “Making End-of-Life Decisions for Dementia Patients.” In it I wrote, “Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully?

Dena Davis, J.D., Ph.D., takes a similar approach in her Hastings Center article. She states the obvious: that if a person had declared in an advance directive that in the case of advanced dementia, they would refuse vaccines for flu or pneumonia, then that would also apply for COVID-19 vaccine. But, what of the patient who does not have a written advance directive or has failed to give such specific verbal directions?

Dr. Davis refers to several surveys where people expressed their preference to die sooner rather than spiral down with dementia. In one survey, more than half of the respondents were either “very unwilling” or “would rather die” than live in a nursing home. In another study of seriously ill but cognitively competent people a majority believed that either incontinence or “being confused all the time” were states equal to or worse than death.

We hardly need a scientific study to convince us that losing our minds and being totally dependent on others is a state almost all of us want to avoid. Now, a novel coronavirus comes along that is especially hard on elderly nursing home patients. It is also hard on the caregivers and vaccinating patients is partly to protect these folks and their families.

I agree with Davis’s personal preference that if she had dementia and was confined to a nursing home, she would give her surrogates instructions to withhold vaccines. Me too.

Once, pneumonia was thought of as “the old man’s friend” – a relatively peaceful way for the elderly to die, a welcome visitor. Dr. Davis speculates, “Could the novel coronavirus be today’s old man’s friend?”

“Grey’s Anatomy” and CPR on Television

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True confession: I have joined my 22-year-old daughter in binge-watching Grey’s Anatomy during the pandemic. Over 300 episodes viewed and counting. I now know about “10-blade,” “clear!” and the importance of declaring “time of death.” Also, I never knew there was so much romance and sex going on in hospital supply closets and on-call sleeping rooms. Now I know.

Grey’s Anatomy (currently in its seventeenth season) follows Dr. Meredith Grey and her fellow surgeons at a Seattle teaching hospital. She started out as a young, single intern and is now a widowed mother of three small children as well as the chief of general surgery. The show is very engaging, depicting extremely dedicated and hard-working doctors. Most are compassionate, empathetic and caring.

CPR is on TV…but it is not realistic

 A staple of medical dramas is the “code.” A heart monitor starts beeping loudly, a doctor starts chest compressions, another grabs the paddles of a defibrillator and yells, “Clear!” Sometimes the first shock gets the heart back in rhythm but most often it takes a couple.

While it seems like all of the cardiac arrests on Grey’s are with a “shockable rhythm.” In real life only about 10% of cardiac arrests are shockable. Medical journals have exposed the unrealistic depiction of CPR on medical dramas.

Why dedicate medical research to the topic? The general public develops a distorted view of the success of the procedure. In 1996, the New England Journal of Medicine looked at CPR on Rescue 911, Chicago Hope and E.R. and found survival rates vastly higher than the actual 17%. On Rescue 911, 100% of those receiving CPR survived.

In 2015 the journal Resuscitation calculated the CPR survival-to-discharge success rate at 50% for House and Grey’s Anatomy. That doesn’t happen in real life. But if 83% of the CPR patients died on TV, not many people would watch it and the sponsors would probably complain.

I have written before about the futility of CPR for large categories of patients. In the years between the fifth (2009) and sixth (2016) editions of Hard Choices for Loving People, the survival rate inched up from 15% to 17%. It is not that the procedure has gotten better. The clinicians are getting better at advising patients and families about who will NOT benefit from CPR. Survival rates have improved because we are doing LESS CPR.

DNR is a big deal

Occasionally on Grey’s, the characters discuss “code status” — whether a patient should have a Do Not Resuscitate (DNR) order. (See my blog on my preference for AND — Allow Natural Death.)

On the show, it’s the patient who is often ready for the docs to write the order so they can have a peaceful death. The family — or even the physicians — sometimes resist. In my experience, this is very realistic. Real-life patients usually come to the conclusion that they are dying before their families or doctors. Their own bodies tell them it is time. This is information others do not have.

The DNR is a big deal. It serves as a sign that it is time to prepare for a comfortable and dignified death. And, on this, I do give Grey’s credit for getting it right.

Living Wills and Advance Care Planning are Wrong. What?

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“Living wills and advance care planning are wrong.” What?

Yeah. I thought that, too. Who could be against living wills? How could planning ahead for possible future medical decisions be wrong? These doubts about the value of living wills came from the GeriPal podcast, “Advance Care Planning is Wrong: Podcast with Sean Morrison.”

Part of Morrison’s beef with these well-established practices for end-of-life care is the amount of research dollars continuing to be poured into “improving” them. Dr. Morrison and his hosts on the podcast are practicing physicians who also conduct research into how to improve medical care at the end of life. He would prefer that some of those limited research funds be channeled into improving other aspects of the end-of-life medical experience.

A healthcare proxy is a good thing.

He does say naming a “healthcare proxy” (a person you designate to speak for you if you can’t speak for yourself) is a good thing. But even that is often fraught with difficulties, like people never talking to their proxy about what their wishes are for things like life-prolonging procedures. Or, worse yet, not even telling the person they are named in their documents.

What could be wrong with a living will, you ask? Living wills are often prepared years before they are needed to help guide a medical treatment decision. We are not the same person we were twenty years ago when we wrote down our wishes. We may have changed our views.

I once had a nursing home patient who had a feeding tube. His eyes could track you around the room, but he could not talk. He soon became nonresponsive and his body began to swell and retain fluids. His wife said to me, in passing, “I guess it is time to get out his living will.” YES, please.

When he was healthy, he always told his wife, “If I am dying, I don’t want anything artificial keeping me alive.” Yet when he was faced with the possibility of dying, he said “yes” to the feeding tube. There is nothing wrong with his decision. If you have the capacity, you have every right to change your mind.

Update your family in light of your current values

The doctors on the podcast found that a decision made years earlier might be different when confronted with a specific medical situation today. What they found more helpful in the medical record is a note about what the patient expressed in conversation with their physician. What was the patient’s motivation for saying, “I don’t want life-prolonging procedures?” Things like “I value quality of life over quantity” or “I just want to see my daughter married in June.” What these docs are looking for is what values their patients have.

My takeaway from the podcast: Have conversations with my family revisiting my wishes about the end of my life. Update them in light of my current values and my current medical prognosis. COVID-19 is a perfect example of why a living will prepared years before might not help. I have changed my instructions to my wife twice in the last several months based on new research regarding the progression of the disease.

So, you might have to ruin another Thanksgiving dinner. I can hear your family, “Oh, Mom. Do we have to talk about that again this year?” Soldier on. Keep updating your feelings and wishes.

You Can’t Get What You Want

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I changed my mind. Since 1990 I had a question to help people make decisions about end-of-life medical treatments. 3.6 million copies and six editions of my Hard Choices for Loving People book have included this question I am now changing.

One essay in a medical journal convinced me in an instant. I read it and it rang true. Dr. Margaret L Schwarze, et. al. wrote “You Can’t Get What You Want: Innovation for End-of-Life Communication in the Intensive Care Unit.” I just recently found this piece from January 2016.

The question I am changing is used so much by doctors, nurses, chaplains and social workers it is almost reflexive. Say you have a demented 85-year-old patient in a nursing home and the family is having to decide about CPR. After explaining the options and prognosis the doctor may then ask, “What would your mother want?” We in healthcare ask this all the time.

We have been well-meaning all these years. We are trying to get the opinion of a patient who can no longer give an opinion. We are being advocates for patient autonomy through the substituted judgement of a family member. The essay authors see several problems with this question.

Several problems with this question

“First, it encourages the family to reflect on treatments, like life support or comfort care, rather than goals.” I am reminded of the doc who cared for my mother. Her dementia had been advancing for years and then she fell and broke her hip. His question to my sister and me was, “How did your mother feel about her dementia?” In many words we told him she hated it and he said, “Okay, here is what we are going to do.” He never asked what treatment plan she would want. He wanted to know how she felt about her underlying condition.

The essay continues with the flaws in the “want” question. “Second, it can shut down discussion; once the family makes a choice, what else is there to say?” The family of the 85-year-old may respond, “Mom loved life. She wants to live. Do everything to keep her alive.” Does she want to live on a machine for weeks or months? Would she want to live not knowing her family? What about the pain and suffering aggressive medical care can inflict? The “want” question cut off this discussion of the patient’s values.

“Third, want is aspirational and evokes fantasies. When we ask patients or their surrogates what they want, we release the constraints of the decision-making context and allow consideration of possibilities outside the boundaries of clinical reality.” A healthcare professional has perhaps seen hundreds of patients like the one where a family is now making a decision about life-prolonging procedures. The docs and nurses know the almost certain disability and/or death awaiting this patient. The family dreams of wanting mom back to how she was before. It’s not happening no matter what is done in most cases.

So, what do we ask if not “what would your mother want?”

Since the first edition of Hard Choices in 1990 I have included “What does the patient want?” as one of five questions to ask as an aid to making end-of-life decisions. Here is what I am changing it to with the next printing:

  1. What does the patient think about their current and probable future condition? A patient with decision-making capacity can speak for themselves. If they are unable to express an opinion then try to imagine how they would think about the state they find themselves in. If the likely outcome of further life-prolonging procedures would lead to increasing disability and/or greater mental decline, what would they say about that? The purpose of this question is to try and imagine what the patient values most.

 

This is a more open and honest discussion of the patient’s values rather than a yes or no about a particular treatment. The family can inform the medical staff about what the patient felt was important. Hopefully, the staff can draw up a treatment plan that affirms those values and is realistic about what further treatment can and cannot accomplish.

In the summer of 1968, as a college student, I did ministry work on the streets of Newark, New Jersey a year after the city had been engulfed in riots. My mentor, Bill Iverson, encouraged us to follow Socrates and ask people questions instead of trying to preach at them. He had a great saying which applies here.

“Ask people the right question and they will give you the right answer.”

Doctors Choose LESS Treatment When Dying

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Here is a great article from 3 years ago about physicians choosing less aggressive treatments as they are dying than does the general public.

http://www.wsj.com/articles/SB10001424052970203918304577243321242833962#

Hank

Photo by Online Marketing on Unsplash

Nelson Mandela and the End of Life

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My friend Connie Holden has written a great piece for the Boulder, Colorado newspaper the Daily Camera. In “Mandela: A Second Prison Sentence?” she reflects on the last months of Nelson Mandela’s life and encourages the readers to consider how they would like to spend their last days. Connie is an oncology nurse, former director of a hospice program, and now the co-founder of The Conversation Project in Boulder County. Thanks, Connie!

 

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