end of life

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Ending ‘The War’ And Giving Up ‘The Fight': How Not To Talk About Cancer

Not a good analogy for cancer: "A Battle Scene" by Luca Giordano, late 17th century, Norton Simon Museum. (Wikimedia Commons)

Not a good analogy for cancer: “A Battle Scene” by Luca Giordano, late 17th century, Norton Simon Museum. (Wikimedia Commons)

By Dr. Isaac Chan
Guest contributor

Hers was the face of someone defeated by cancer. Our conversation was grim. She wanted to “fight,” to continue treatment. But there were no more options.

I vaguely remember speaking, feeling hopelessly ill-equipped. I, too, felt defeated. As a young physician and aspiring oncologist, I wondered: How do we prepare ourselves and our patients for these conversations?

Thankfully, I am not alone in struggling with this question. A new theme in medicine has emerged: how to talk about dying. As a field, oncology has been at the forefront of this movement. Some suggest making exposure to end-of-life encounters mandatory during medical school. Others stress creating systems and providing more resources for patients and doctors to encourage earlier planning for death.

But in order to facilitate and advance this difficult conversation, we must first change the very words we use to discuss cancer.

When the National Cancer Act was signed in 1971, our nation’s political and social will was focused on a “war on cancer.” Our widespread use of this language is rooted in a propagandist history promoting the belief that, with enough resources, this is a conflict we will win. Consequently, victory became defined only by “defeating cancer,” or finding a cure.

A visit to the American Cancer Society website asks you to join the “fight against cancer;” and a majority of public cancer-related media is packed with more war imagery. While the war description of cancer has resulted in unprecedented attention and fundraising for cancer care, research and survivorship, a balance should be reached between these successful efforts and language that is a realistic assessment of what can be accomplished today, for the patient, right now.

Cancer is a unique disease. To take the war analogy further, cancer is not a foreign agent infiltrating our bodies, such as an infection — cancer is a coup d’état, a tumorous growth from within us. One of the great paradoxes of cancer treatment is that targeting cancer inevitably means targeting our own bodies. Continue reading

Out, Proud And Old: LGBT Seniors More Likely To Age Alone

(W.E. Jackson/Compfight)

(W.E. Jackson/Compfight)

By Jessica Alpert

Margueritte Wilkins was, as she likes to say, “born, bred, and buttered” in Manhattan’s Sugar Hill neigborhood, a northern section of Harlem.  Wilkins remembers that she came out to her family when she was in kindergarten: “My brother called me an early bloomer.”

Her family didn’t really know how to respond to her homosexuality and so they just “played it by ear.”  As she found support in friendships throughout middle and high school, her relationship with family deteriorated. Now, at age 66, Wilkins has no contact with her family.  “They think something is wrong with me,” she sighs.

Recent analyses suggest that there are at least 1.5 million lesbian, gay, bisexual, and transgender (LGBT) Americans over the age of 60.  These numbers are based on an estimate from UCLA’s Williams Institute on Sexual Orientation and the Law which has calculated that approximately 3.8 percent of Americans identify as LGBT.

LGBT elders deal with significant economic and health disparities as compared with heterosexual seniors. According to a 2011 national health study co-authored by the Center for American Progress and Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders (SAGE), more than half of LGBT respondents have been told by a doctor that they have depression; 39 percent have seriously contemplated suicide; and 53 percent feel isolated from others. Social isolation remains a major issue as LGBT seniors are 3-4 times less likely to have children, twice as likely to live alone, and twice as likely to be single.

According to a 2010 MetLife Study  of Boomers from the MetLife Mature Market Institute, about 42% of the LGBT population identified their relationship status as single, far higher than the 27% of the general population. Like Margueritte Wilkins, many LGBT seniors may also be estranged from their biological families.

“This generation came of age when homosexuality was considered criminal, a form of mental illness, or a security risk,” says Brian De Vries, a professor of gerontology at San Francisco State University. “They don’t have the safety net available to them that heterosexuals have.”

Continue reading

The Artery: Atul Gawande On How We Want To Die

Dr. Atul Gawande is a general surgeon at Brigham and Women’s Hospital and a professor at Harvard Medical School and the Harvard School of Public Health. (Courtesy)

Dr. Atul Gawande (Courtesy)

First, just to restate what I posted on CommonHealth’s Facebook page on Friday in response to Dr. Atul Gawande’s superb and reassuring New Yorker piece, “The Ebola Epidemic Is Stoppable”:

Who here agrees that Dr. Mehmet Oz should be stripped of his “America’s doctor” title and it should be given to Dr. Atul Gawande?

Fifty readers “Liked” the idea, and here’s some more ammunition for that proposition: Dr. Gawande’s latest book, “Being Mortal: Medicine And What Matters Most In the End.” It’s reviewed on WBUR’s arts blog, The Artery, here, with the conclusion:

Perhaps surprisingly, geriatric doctors and hospice social workers have found that refusing extreme medical procedures does not mean refusing life. Unlike a 30-something patient with one fixable problem, an elderly patient has a spectrum of problems that cannot be fixed, only managed. Making small but key changes, like simplifying medications, controlling arthritis, ensuring good meals and maintaining social connections, can be more effective in prolonging life than some extreme medical measures.

“Being Mortal” is a valuable work, and a timely one. By 2044, there will be as many people in the world who are over 80 as there are under 50. Gawande reflects that, “It is not death that the very old fear …. It is what happens short of death — losing their hearing, their memory, their best friends, their way of life.” These are what matter in the end.

Read the full review on The Artery.

McInnis House Provides End-Of-Life Care For The Undocumented And Homeless

Kervin Alleyne, 67, receives end-of-life care at the Barbara McInnis House in Boston, which has 100 beds for homeless and undocumented individuals. He says it’s “one of the best places that a person could ever be.” (Gabrielle Emanuel/WBUR)

Kervin Alleyne, 67, receives end-of-life care at the Barbara McInnis House in Boston, which has 100 beds for homeless and undocumented individuals. He says it’s “one of the best places that a person could ever be.” (Gabrielle Emanuel/WBUR)

The roughly 160,000 undocumented immigrants in Massachusetts do not have access to most public health insurance programs. Some doctors and nurses in Boston have noticed this can pose particular challenges at the end of life, where the undocumented do not have access to nursing facilities or hospice care.

Some health care providers are stepping in to help these undocumented and dying individuals.

‘This Place Is Special’

“How’s your breathing been feeling?” the nurse asks. “Take a deep breath. Has the pain gotten any better?”

“Yes, I tolerate it better,” Kervin Alleyne says, reassuring his nurse that the bone pain he feels is manageable.

Alleyne is dying of metastatic prostate cancer, but he is not one to complain.

He looks around the room at the three other hospital beds, and then out the window to the concrete and traffic of Boston’s South End.

“One of the best places that a person could ever be,” he says. “This place is great. This place is special. Trust me. Trust me.”

Before arriving at this special place, Alleyne was staying in a homeless shelter.

But for the past year he’s been at the Barbara McInnis House. It has over 100 medical beds for homeless individuals.

“We help individuals who are too sick to be in shelters or on the streets but not sick enough to actually warrant a medical bed in a hospital,” explains Denise De Las Nueces, the McInnis House medical director.

Usually homeless patients are discharged after about a dozen days — when they are healthy enough to go back to the streets.

But what about homeless patients who are dying? Continue reading

The Game Of Death: You Win By Talking About Yours The Best

Game night in Medford, Mass., for players of “My Gift of Grace,” a new game meant to facilitate end-of-life conversations. (Gabrielle Emanuel/WBUR)

By Gabrielle Emanuel

It’s game night on the top floor of a bank building in Medford, Mass., and 25 people have divvied themselves up around the circular tables. Four women, none of whom know each other well, are seated near the snacks busily discussing their future burials.

Katie Wallace, a native of nearby Somerville, is confident she wants to be cremated. But it’s a bit more complicated for her. The urns are accumulating. “I have a room in my house where I have the ashes of six different people,” she says. “So I have to figure out what to do with all of those people.”

As a lavender dusk settles outside the floor-to-ceiling windows, the women chuckle about whether Wallace should pass this “inheritance” on to a younger relative or, perhaps, invest in a columbarium.

This isn’t just small talk. It’s part of the game. These woman and men, all of whom are older, have gathered to play a card game — one with chips, a deck of cards, and a winner and losers. But this isn’t poker or blackjack.

Question 15: What music do you want to be listening to on your last day alive?

The game, called My Gift of Grace, aims to facilitate conversations about the end of life. It’s part of a growing trend: efforts aimed at encouraging talk of death well before it is imminent. From The Conversation Project to Honoring Choices and another card game called Go Wish, all seek to find ways around the usual distaste for facing death in advance, so that people can better control the care they receive at the end.

“I think we are on the early cusp of what I hope will become a groundswell of change,” said Dr. Lachlan Forrow, director of the Ethics and Palliative Care Programs at Boston’s Beth Israel Deaconess Medical Center, in a phone interview.

The idea for this game started when The Action Mill, a Philadelphia-based design firm, was interviewing a hospice nurse, remembers Nick Jehlen, who ultimately led the game’s design team. Continue reading

Share The Story Behind Your Opinion On Assisted Suicide — Here’s Mine

(Photo illustration by Alex Kingsbury/WBUR)

Yesterday, we took a look at the contributions flowing to both sides of Question 2, the measure on assisted suicide that is on next month’s Massachusetts ballot.

As I noted, I was struck by the hundreds of small individual contributors to support Question 2, also known as Death With Dignity — about 500, by my rough count. Several dozen contributed to the opposition as well.

And here’s what I thought: I bet just about every one of the people on either side of the issue has a story. They’ve witnessed a death, and that experience influenced their opinion. So here’s an open invitation: Won’t you share your story in the Comments section below?

Here’s mine:

As I’ve written here before, my mother was in a terrible accident that left her in a persistent vegetative state, and when all hope was gone, we brought her home to die in accordance with her very clear wishes.

We couldn’t just give her an overdose. But we could “withhold care,” so we stopped her tube feedings to let her effectively starve to death. She lay in a hospital bed at home for nine days, slowly fading. Even knowing her wishes, and with support from the most saintly and sensitive hospice workers, it was a nightmare.

At one point, a hospice doctor told us that if my mother showed any signs of discomfort, her morphine dose could be increased. I remember snapping at him something like: “Why in the world would we wait for her to show ‘signs of discomfort’? Crank the morphine all the way up now! Why let there be even a chance of pain? The point here is for her to die, and if the morphine depresses her breathing and hastens that along, so much the better!”

Continue reading

Showing You The Money: Donations For And Against Assisted Suicide

suicide finance

(Source: The Massachusetts Secretary of State’s Website)

In ages of yore, you had to trek into a state office building and shuffle through piles of papers to discern which political forces were backing which candidates and ballot initiatives. These days, thankfully, everything is only a click or two away.

I was wondering about the funding of Question 2 — also known as Death with Dignity and physician-assisted suicide — and all I had to do was drop in to this crystal clear section of the Secretary of State’s Web presence. It lists the groups that support or oppose Question 2, how much money they’ve taken in and how much they’ve spent. (My, my, it also shows about $1 million in support of medical marijuana and only about $3,000 in opposition — but that’s another topic.)

If you drill down just a bit, by clicking on a particular sum, you can see specifically who contributed, and how much. For example, I clicked here to see the breakdown of the $2 million in contributions to the main Question 2 opposition group, The Committee Against Physician Assisted Suicide.

Expectably, there’s a strong Catholic presence. There’s also $250,000 from American Family Association Inc., with the notation that it was refunded. The Associated Press reported last month that the American Family Association is a Mississippi-based group with anti-gay views, and the Question 2 opponents returned the money “in the interest of more focused debate.”

If you click on Dignity 2012, major supporters of the measure who’ve pulled in nearly $500,000, you see money from two national organizations, Death With Dignity National Center and Compassion & Choices, and then a very long list of mainly small donations from individuals.

I didn’t count carefully, but a rapid scroll through suggests there are about 500 names there, while I see only about 40 names of individuals on the list of donations to the opponents. Readers, if you scan the lists, does anything else strike you?

Let’s Discuss Dying: ‘The Conversation’ About How My Dad Wants To Go

Charlie Ritz, 85, shares his wishes for the end of life as part of The Conversation Project. (George Hicks/WBUR)

My dad, Charlie Ritz, has given me countless gifts. One of the more recent ones is his willingness to talk openly about the fact that, though he’s healthy, when you’re 85 you’re not going to be around forever. He has made me cheat sheets of all the numbers and names I’ll need to handle his estate. He has signed his living will. And he has told me in so many words that he only wants to keep living if the quality of his life is good.

But it’s one thing to say that. We both know how hard it is to act when the time comes. Nearly 25 years ago, my mom was in a terrible car accident that left her in a coma and then a persistent vegetative state. After about six months, there was no real hope that she would ever wake up. She’d been a member of the Hemlock Society and had always been clear that she wouldn’t want to live like that. Years earlier, she’d even made my dad promise that if she asked him to bring her suicide pills, he would: “She touched my arm and said, ‘And if I can’t ask you, you’ll know,'” he said.

We knew. Even so, it took us more than a year after all hope was gone to finally bring ourselves to remove my mother’s feeding tube. My dad went to see her every day, and apologized to her for breaking their agreement.

So when I heard about The Conversation Project, I asked my dad if he’d be willing to tape “the conversation” with me, to help us and others make sure we’re as clear as possible about end-of-life choices. The project has just been launched by a group of media and medical professionals who want to help families and loved ones begin to talk about end-of-life care well in advance.

Dr. Jessica McCannon, a Massachusetts General Hospital critical-care physician and an advisor to The Conversation Project: “If patients and families can do this around their kitchen tables, and come to the hospital saying, ‘Look, I know my mom; this is what’s important to her,’ then we can really, calmly, make decisions that make sense.”

My talk with my dad, lightly edited, is below. Just to jump ahead, I have to admit that I kind of dreaded it. But I ended up finding it surprisingly comforting. I’d thought this was something I was doing for my dad, to get clear on his wishes. But in the process I learned that he was doing it for me. That he wanted to make sure I came away from his ending without guilt, knowing that though he didn’t want to die, he didn’t fear it.

jessica mccannon

Dr. Jessica McCannon, an advisor to The Conversation Project (George Hicks/WBUR)

I also learned some things I didn’t know. I learned that he’d very much like to have my children, who are 8 and 10, at his deathbed if they’re willing. If their beloved faces were the last thing he saw in this life, he said, that would be a good way to go.

And I learned that he and I just have very different attitudes toward death. I think death is followed by a great big nothing, and I’d rather have just about anything than nothing. At 85, he feels like he’s “had a life;” he only wants to stay longer on his own terms — a feeling that he tells me is hard for a younger person to imagine. True.

Readers, if this conversation leaves you with personal questions, you can go to The Conversation Project or post them in the comments below; Dr. McCannon has kindly agreed to respond. And now, our Conversation:

Carey: So this is a starter kit. It says it doesn’t answer every question but it helps you get your thoughts together and have the conversation with your loved ones. And you don’t have to complete it in one sitting. So it starts with a bunch of facts about how people don’t tend to communicate about their end-of-life wishes. Actually let’s begin with: So why are you willing to do this?

Charlie: I feel strongly about it and I just don’t mind airing my thoughts, I guess.

And I think for both of us, part of what makes us feel so strongly is our experience with Mum, that we saw how hard it can be for relatives to follow wishes.

And it’s important to me that you — when and if you have to help me in any way — that there’s no guilt involved. That my wishes are what’s involved here. Continue reading

In Memoriam: Eloquent Writer Who Chronicled Own Dying

dudley clendenin

Dudley Clendinen and his daughter Whitney in 2007

I shouldn’t have been surprised but I still gasped with sadness this morning when I saw the May 30 obituary on Maryland Morning’s Website:

The writer and journalist Dudley Clendinen died today in Baltimore after a year and a half long battle with amyotrophic lateral sclerosis, or ALS. Dudley worked as a reporter and editorial writer for The New York Times, and was the author of several books, including Out for Good: The Struggle to Build a Gay Rights Movement in America, on the evolution of the gay rights movement, and A Place Called Canterbury: Tales of the New Old Age in America. He remained in his home until he was moved to hospice care at the Joseph Richey House earlier today. He was 67 years old.

Dudley was open about his experience with terminal illness, both in the op-ed pages of The Times, and on Maryland Morning, where he spoke about the disease in a series of interviews with Tom Hall called “Living with Lou: Dudley Clendinen on a Good, Short Life.

Maryland Morning will post audio of a remembrance of Dudley later today. Its series was extraordinary, as was Dudley’s courage and style as he did it. We posted praise and excerpts of it here, here and here. One of my favorite quotes: “Life gets so quirky and interesting when you’re dying.” Dudley was writing a book about the end of his life; I hope he got close enough to finishing it, and though I don’t know of any official post-mortem instructions, plan to buy many copies of it when it comes out, in lieu of flowers…

For Decisions On Dying, Today’s The Day

April 16 is National Healthcare Decisions Day.

We’re not talking insurance plans, reproductive rights, exercise routines or nutrition.

We’re talking death — one of the most important decisions you’ll have to make for yourself, your parents, your grandparents, perhaps others.

Consider:

  • Who do you want responsible for making decisions for you in case you’re ill?
  • What kind of care do you want to receive? Do you want aggressive treatments to prolong life or palliative care to provide comfort measures, increasing the quality of life in your final days?
  • What do you want to happen to your body after you pass away?

These are all tough questions, but they’re important ones.

It turns out that one out of every four Medicare dollars is spent on treatment during the last year of life. If we’re spending that much money, we should be investing an equal amount of time and thought into seriously talking about this time period with our loved ones.

National Healthcare Decisions Day encourages people to fill out an advance directive. This legal form outlines answers to many of the above questions, ensuring your end of life wishes are upheld once you’re unable to communicate them. (You might have heard of a living will — same idea.)

There’s this push to “have the conversation” with your older relatives — and I’m all for that. In fact, next weekend I’m setting up a Skype date with my parents so we can fill out their advance directives together. (If you want to do something similar, download the necessary forms. I personally recommend Five Wishes or your state’s own advance directive form.) Continue reading