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Advance Directives: Rarely Easy, Always Important

Inside Health Care
Tuesday, April 10th, 2012

Inside Health Care posts feature recent news and blog posts from the health care community and are part of the Center for Advancing Health’s portfolio of free, evidence-based coverage of what it takes to find good care and make the most of it.  By Monica Kriete, CFAH Communications Associate.

“Without advance directives, even a loving child may be ignorant of her parent’s wishes,” author Susan Jacoby writes in a recent New York Times editorial, Taking Responsibility for Death.  When Susan’s own mother died, many years after writing her directives, Susan said, “It was an immense comfort to me, at a terrible time, to have no doubts about what she wanted.”

Unfortunately, implementing an advance directive can sometimes be more complicated than writing one.  Amy Berman, Program Officer for the John A. Hartford Foundation, writes about her uncle being pressured to rescind his “do not resuscitate” order (DNR) in order to undergo surgery to repair a broken hip.  Her blog post, Can Someone Override Your Advance Directive?, raises a number of questions: Did the doctor pressure her uncle because “DNRs can hurt the physician’s quality metrics”?  Or was it because, as a commenter points out, “putting a patient under anesthesia for a procedure constitutes a positive intrusion into their own life support mechanisms”? And lastly, is it possible to write a directive that will account for every contingency?

Even in more clear-cut situations, implementing an advance directive is not always easy.  At the GeriPal blog, Dr. Dan Matlock writes about Being Accused of Murder in spite of a patient’s very clear-cut advance directive: “The patient had suffered a devastating stroke. Her advance directive (notarized no less) stated that she did not want any artificial means of life support, specifically mentioning artificial nutrition or hydration.” Yet in order to convince the primary care team that the artificial hydration the patient had been given should be discontinued, Dr. Matlock had to call the patient’s sister, who had been granted medical power of attorney. Remarkably, the patient’s primary care doctor accused Dr. Matlock of murder, an experience that is not uncommon among palliative care specialists, according to a study Dr. Matlock cites.

All three essays show that carrying out an advance directive can be tricky and appointing a health care proxy or medical power of attorney with whom you’ve had a frank discussion about your end-of-life wishes can help.  For more information, check out the Prepared Patient® feature article Advance Directives: Caring for You and Your Family.

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Guest Blog: Four Perfect Questions

Elaine Waples
Monday, April 9th, 2012

Elaine Waples underwent major abdominal surgery in 2010 for stage 3 primary peritoneal (ovarian) cancer that had metastasized to several organs.  Since then she has undergone two years of a robust treatment regimen including 8 rounds of chemotherapy.  Her journey is chronicled on the online health care magazine Care and Costs, edited by her husband, Brian Klepper.  This piece originally appeared at Care and Cost on April 7, 2012.

In the fall of 2010, Atul Gawande, surgeon at Brigham and Women’s Hospital in Boston and an associate professor at Harvard Medical School, delivered a touching speech at the October New Yorker Festival.  My husband attended with a friend and, because he said it so profoundly impacted the audience, I watched it myself on video the next day. It was indeed amazing. Dr. Gawande, author and national health care presence, spoke unabashedly about his lack of skill in conducting end-of-life conversations with his patients.

How could that kind of conversation ever be easy?  I remember when my father-in-law passed away nine years ago.  A nervous young doctor had the uncomfortable task of telling him that nothing more could be done about his leukemia and it was perhaps time for hospice.  As he stumbled through the explanation, my father-in-law let him off the hook easily by saying “Well, hell son, I didn’t think I’d live forever.”  It wasn’t the doctor initiating an end-of-life conversation, but rather the patient reassuring the doctor by simply announcing, albeit a bit theatrically, that he understood what was going on and he was ready.

In the 2010 presentation, Dr. Gawande talked about how he searched for a way to help his patients understand, accept, and know when they are ready.  He spoke with several end-of-life physicians who told them how they do it every day.

Ultimately, one physician, Dr. Susan Block at Dana Farber Institute, gave a simple, straightforward, and elegant answer that resonated.  She told Dr. Gawande that there are four questions she mentally carries around that guide her through the difficult but important conversations. And those conversations are not about sophisticated hard choices or last minute “epiphanies.” Instead, they are about the process of understanding hopes and fears.

Here are her four questions:

Do you understand your prognosis? What are your fears about what is to come? What are your goals as time runs out? What trade offs are you willing to make?

Four perfect questions.

After seeing the video eighteen months ago, I scribbled those four questions onto a torn scrap of paper and tossed it into a stack of things that I would, like Scarlett O’Hara, think about tomorrow.

But once in a while, I unearth it unexpectedly and then pause to consider the genius of Dr. Block.  Sometimes it is because I wonder if I may personally face the end-of-life choices sooner than I ever expected.  At other times, what really strikes me is that the questions are also about the process of recognizing hopes and fears in every day life.  Think about the daily choices and hard decisions, especially the unexpected ones, that we are faced with. And with each one we have to ask ourselves what is going on; what scares us about it; what do we ultimately want to accomplish; and what are we willing to do or sacrifice to make it happen?

Four perfect questions.

They came to the forefront again recently when I read about a family physician, Dr. Ken Murray, who wrote a Wall Street Journal essay titled “Why Doctors Die Differently.”  He observed that doctors are more likely than other people to decline end-of-life interventions that have little likelihood of benefit.

It’s not something that we like to talk about, but doctors die, too. What’s unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.

Dr. Murray goes on to talk about the importance of advance directives and all the other technical issues that must be addressed. But those not withstanding, I have to wonder if doctors tend to go serenely and gently because they have spent years, by virtue of what they do and see, knowingly answering those questions for themselves.

I recently shared the questions with a friend who is close with someone facing an end-of-life situation.  She was amazed by their simplicity and perfection, and I realized what a small but meaningful gift it is to help someone accept what is to come with grace and dignity.

It was eye opening. It made me think about the fact that one day, we will all be faced with the end-of-life. And so, perhaps today we might promise ourselves for the sake of spouses, partners, family, and friends to make an effort to understand what can truly happen to us, to acknowledge our fears, to plan what we want to do with whatever time we have and to know what trade offs we are willing to make.

They are indeed, four perfect questions.

http://fora.tv/embed?id=11018&type=h

How to Talk About End-of-Life Care with a Dying Patient from The New Yorker on FORA.tv

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1st Person: Hospice, My Husband and Me

First Person
Monday, December 26th, 2011

As Jerome Rafferty, diagnosed with a progressive form of dementia and an incurable, antibiotic-resistant infection, became more ill, his wife, Renata Rafferty, used hospice services at home initially to assist her in caring for him.

Once hospice got involved and came to us at home, it was anything we needed. Hospice is not the place where you go to die, but the place you go to celebrate and finish your life, in an environment where that is the sole and only focus.

When we signed on to hospice, the very first visit they brought a booklet about what to expect when someone is dying relative to appetite, demeanor, physical actions and behaviors. When those things started happening, I was very comfortable rather than afraid.

Eventually, Renata realized that having access to the medical equipment and round-the-clock care of a stand-alone hospice facility would help Jerome be more comfortable — and relieve some of her emotional and physical burden, too. Once she made the choice to transfer Jerome to the hospice facility, she could finally relax in the home-like atmosphere there.

It gave me some relief. From a caregiver’s standpoint, it meant that I could leave the room to go to the bathroom or leave to make a phone call to a family member and know that he was cared for.

Five days later, Jerome died in the hospice facility, in October 2009.

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The Waiting is the Hardest Part

Jessie Gruman
Wednesday, December 14th, 2011

Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…

 

That old Tom Petty song, “The Waiting is the Hardest Part,” keeps running through my mind. Four of my friends are waiting to hear the results of medical tests taken last week.

  • Lucas has exhausted all of the standard cancer therapies for rectal cancer and is waiting to hear if he is a candidate for any experimental treatments.
  • Sam, who has lived through aggressive treatment for multiple cancers, is waiting to hear results from a test that will tell him if the fact that he is so very, very sick is due to one of them recurring.
  • Lucy just had major abdominal surgery and is waiting to hear the results of the pathology report that will determine whether or not her cancer can be treated at all.
  • Phil, who has been in remission from two different leukemias, had a heart scan last week that picked up a scarily suspicious spot and is now waiting to find out if his remission is over or a new type of cancer has developed.

That is a lot of high-stakes waiting going on.

Normally, learning that someone I know spent the weekend surfing towering waves of anxiety about possible bad health news might steer me toward writing about the need for reliable ways to deliver test results quickly to patients, or perhaps to comment on new curricula that are helping clinicians learn to deliver bad news more compassionately.  Both of these are important.

But this week – maybe because four seems like such a large number of friends to be facing such uncertainty, or maybe because I was also waiting for health news last week – I’m struck by how many different kinds of waiting illness involves.

People who live with serious illness, like my friends, are no strangers to waiting for this kind of phone call.  Each has received at least a couple that have changed their lives since their first diagnosis.  And so far, these calls have set off a now-familiar reshuffling of priorities, a redefinition of what the future might look like, a cascade of decisions about tests, surgeries and treatments.  The waiting down-shifts into the more proximal:  Have four weeks on this drug quelled the nausea?  Has this food supplement helped with weight gain?

Each of my friends is now waiting for another call.  And for each, this time the call may open the door to a new kind of waiting altogether.  What does it feel like to come to the end of the road of active intervention?  What gets “set off”?  What decisions “cascade”? This is a big transition, especially for those who, despite all odds, have stayed alive for years by making use of the latest treatments health care has to offer.  How can there not be something, somewhere that can cure or at least slow this disease down, they wonder.  And after years of focusing on doing everything in their power to stay alive, how will they spend their time and mental energy now?  Waiting to die is a whole new proposition.

Not a lot is known about what this transition is like for individuals.  In part, this is probably due to many people continuing to seek treatment on their own or in league with their physicians long after standard approaches have been exhausted.  In part, the lack of accounts about this transition can be attributed to the declining health people experience when they reach the limits of treatment.  Many are pretty sick by then and have little energy to participate in research studies, writing or public reflection.  They have other things on their minds.

While media reports of people deciding not to be treated for a new cancer diagnosis or ending treatment have increased in recent years, coverage of the potential of genetic discoveries, technology and drug development to make disease and death obsolete continue to dominate.  In 2010, Atul Gawande wrote about “what medicine should do when it can’t save your life,” in which he illustrated the difference between palliative care and hospice care with stories of individuals.  Amy Berman, of the Hartford Foundation, is currently writing thoughtful, illuminating essays that recount her experience living with inflammatory breast cancer after choosing not to seek treatment for it. And the Web makes it possible to find a few individuals’ stories.  But overall there is a lack of both data and narratives that could help my friends and others fill in the blanks about what others have experienced when making the decision to end treatment and figuring out how to live until they die.

I’ll spare you a description of possible policy implications, a discussion of how clinicians and researchers might approach producing and providing this kind of information to patients and why they won’t, and a description of probable objections to the need, utility, expense.  It may be that we patients and our loved ones will, over time, make such stories available to one another.  I don’t know.  I do know, however, that the success of modern medicine means that more of us will encounter this emotionally- and existentially-charged intersection of health care and life after treatment ends, and that this time period needs to be more approachable to us.  Without it, the seductive promise of a 10 percent chance that an experimental treatment might give us one more month will hold sway.  It is, after all, familiar.

In the meantime, each of my friends is a bead on a string that I hold briefly in my hand many times a day as I join them in waiting for the news that may change their lives, fearing the worst, hoping for the best.

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