Who’s important in my end-of-life plan?

Editor’s Note: This article was originally posted on BestEndings.com  a website whose mission and mandate is to help navigate personal and medical decisions as life’s end nears.  Founder, Kathy Kastner, encouraged me to tackle the subject, after all, who’s a better candidate for an abrupt, or unpredictable ending, than a 61 year-old male with a life-long chronic illness. Its definitely a touchy subject, but she gave me some tools and direction to get started. Here’s my first take:

Who’s important in my end-of-life plan?

Contemplating that question, it took me a moment to realize that “I’m important!

 Taking Inventory of Who I Am

It starts here, similar in some respects to a computer chip, the intelligence that powers the organism, I am:

  • 61 years old, orphan son
  • Living with Crohn’s disease for 30+ years, with multiple surgeries, treatments, medications
  • Husband of 32 years in a loving relationship (more on this later)
  • Parent of 2 young adults who are compassionate, thoughtful, open minded critical thinkers.

Who are my ‘important’ extended family relationships?

  • I’m a younger brother (yes at 61) he and his wife are present in my life.
  • I’m a cousin to people who are important to me. Some of these relationships play major continuing roles that are vital to my existence.
  • I’ve got in-law status.
  • I’m an adopted member of an Israeli family.

I’m going to have to determine what guidance I’ll have to give them so they’ll feel comfortable with themselves about my situation.

Beyond blood: Chronic illness is a team sport.

As a Crohn’s disease patient, I have several team members. While I may be the Captain of my Team, for over 30 years I’ve relied on someone in particular who’s played many important roles. It’s no secret that my wife, Cec, has been on this trip with me for decades. She’s managed my life and my kids when I’ve been in and out of hospital like a revolving door. I can’t imagine outliving her, after all, she’s one of those damn healthy teachers. So I’m counting on her hanging around to be at my side, supportive and playing the good wife role to the very end.

 My medical team:

I have a family doctor, a gastroenterologist, and a dermatologist, all of whom I see on a regular basis. There always seems to be someone else joining in at times, from naturopathic doctors to physiotherapists, nutritionists, surgeons etc.

I go to a clinic every 2 months to get medication via an intravenous drip. This is another support team – from the nurses who infuse and care for me, to the pharmacists and coordinators who schedule the appointments.

Living with a chronic condition, nothing is simple

As an example: I can have what appear to be simple problems. A skin infection for instance: Lots of people think a course of antibiotics would take care of that. They’re probably right – for most healthy people that is. For me, however, it’s not automatic. One key reason is that my medication, in order to keep my Crohn’s in check, effectively suppresses my immune system.

This makes simple situations like an infected paper cut or an abscessed tooth a significant challenge because antibiotics and the biologic drug I take don’t like each other. Understand that patients are warned that “fatal infections” have been known to occur. This is no trivial matter to me and I’m ultra vigilant anytime I get a simple cut anywhere on my body. I rely heavily on my entire medical team anytime I have a situation that resists healing. The price for neglect could be my life.

 Taking ‘blood relations’ out of the end-of-life equation:

Who else plays a part in my life that’s not superficial? I haven’t ranked them in priority, but there’s a bunch of people who all play an important role in my life and will continue to do so to the very end:

  •       my mechanic
  •       my barber
  •       my professional advisors: accountant, lawyer, investment advisor
  •       my banker
  •       my customers

There’s much to consider, as I consider ‘managing’ not just my own health but those who will likely remain important and very much a part of my life, right up to the end.

 

A Patient Movement Finds Its Voice

Do you remember the last time you felt you weren’t being listened to? Remember how angry it made you feel? Now imagine that anger multiplied by 15.

Back in October, we introduced you to a group of 15 women behind a fledgling patient advocacy movement. They came to Toronto from across Canada this past summer to share their anger over a shared experience: of having their pain diminished or ignored by society and the healthcare system.no more silence

These women are living with, and suffering from, uterine fibroids (UF) and similar debilitating conditions—and not being heard. In a safe, non-judgmental environment, these women felt free to share stories that needed to be told—stories of years of severe pain, embarrassment, and humiliation. Often, these stories had never been told before.

Sure, lots of anger was expressed throughout the day. But the women discovered—through the mere act of listening to each other’s stories—a new meaning and purpose to their experiences. Becoming more conscious of the myths that had defined them—the biggest being that the only treatment available is hysterectomy—and of a collective narrative of not being listened to, the women decided to unite their voices on behalf of others who are suffering in silence:

“We are speaking today for all the women out there who are still on their toilets at two in the morning passing blood clots and being desperate, and not getting the answers that they need from their doctors, and I’d like for all of us to keep those women in mind. Those women whose personalities might not be as strong as us, whose voices might not be as strong as us, I’d like us to keep those women in mind today as we move forward and remember that the underprivileged, the under-educated, the under-resourced women of our country are being starved of information even more than we are. Let’s keep those women in our minds and hearts today and hopefully we’ll have some solutions that will help all women.”

And so a movement was born. The 15 women are up for the challenges and hurdles they will face as they build their movement’s membership, refine its mission, and amplify its voice. As Patricia Lee reminded the others, even though they may sometimes feel like they’re swimming upstream, they truly are pioneers in empowering other women to advocate for timely and appropriate care and treatment:

To support the movement in its mission to create and empower a collective voice of Canadian women suffering with these conditions, we’ll be sharing these women’s real words and experiences in a series of posts over the next several weeks. By sharing these stories, we hope to:

– improve awareness and understanding of UF and similar conditions to improve women’s treatment outcomes,

– equip women with valuable resources, including tools to improve communication skills with their physicians,

– connect women to each other so that they can tell their own stories, share information, and learn from their collective experience, and

– empower women to become their own best advocates of their own healthcare.

In the next installment, you’ll hear personal stories that speak to the societal bias against menstruation that keeps some women suffering silently.

To see all of the Fibroid Movement videos click here.

Illustrations © Leah Silverman, discoverydoodles.com, for Sandpile Inc. July 20, 2013

  • Fibroids Movement Series
  • Women with Fibroids Movement: Part Six—“Sheros” Wanted!

    Posted on by Lisa Ferguson with Zal Press

    Women across the country are banding together to advocate for timely and appropriate care and treatment. The uterine fibroid patient advocacy movement is creating an organized and unified patient voice, the first step towards being taken seriously by the medical community—as opposed, Patricia says, “to being seen as a lot of screaming women, which is kind of what we’re taken for now.” More women like Mercy, who had the courage to find her own solution, are connecting to each other, learning from their empowering and motivating experience: Even when a woman is armed with knowledge about abnormal uterine bleeding treatment Read More…

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  • Women with Fibroids Movement: Part Five—Face to Face with Your Physicians

    Posted on by Lisa Ferguson with Zal Press

    Information is powerful. When you’re ill, it’s your right to be given the information you need to make the best decisions for you and your body. A question is a powerful thing, because it yields information. Ask as many questions as it takes to understand your condition and your treatment options. Ask questions like your life depends on it—as we’ve learned from the stories told by the women leading the uterine fibroid patient advocacy movement, it kind of does. It’s important to ask smart questions. We’ve made it easy for you. Here are the top questions to ask… When you Read More…

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  • Women with Fibroids Movement: Part Four—Information is Power

    Posted on by Lisa Ferguson with Zal Press

    Practitioner-patient interactions can represent a potential barrier to timely and appropriate diagnosis and treatment, as we learned in a previous post in this series. In the prolonged and confusing healthcare journeys that some of the 15 women at the forefront of the uterine fibroids patient movement have gone through, practitioners have sometimes diminished their suffering and denied them information: “After a million trips to my GP, he told me to just try putting up with it.” “I asked him about my test results. He said, ‘You wouldn’t understand.’” So how do you advocate for yourself and speak confidently with your Read More…

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  • Women with Fibroids Movement: Part Three—Living With Fibroids “Affects Everything You Do”

    Posted on by Lisa Ferguson with Zal Press

    “I think we can agree on one thing: that we all woke up one morning and whatever the focus of that day was, that changed. What is up with this bleeding? What the heck is up with the clotting?” - Patricia Seven years ago, I had the first real health crisis of my adult life. After several months of denying obvious signs that all was not well with my digestive system, the day came when I couldn’t eat anything without pain. I remember one episode of pain so crippling that I lay crying on my bedroom floor in the fetal Read More…

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  • Women with Fibroids Movement: Part Two—Menstruation, the Last Taboo

    Posted on by Lisa Ferguson with Zal Press

    Roughly one of every three women will suffer from abnormal uterine bleeding at some point in their lives, writes advocate and award-winning journalist Holly Bridges in The UnHysterectomy: Solving your Painful, Heavy Bleeding Without Major Surgery. She’s one of them, having suffered with uterine fibroids for almost two years. Holly is one of the 15 Canadian women who have kickstarted a movement to advocate for timely and appropriate care and treatment of uterine fibroids and other common causes of abnormal uterine bleeding. Although a small group, they represent the universe of women suffering physically, emotionally, socially and economically throughout Read More…

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  • Women with Fibroids Movement: Part One – Finding a Voice

    Posted on by Lisa Ferguson with Zal Press

    Do you remember the last time you felt you weren’t being listened to? Remember how angry it made you feel? Now imagine that anger multiplied by 15. Back in October, we introduced you to a group of 15 women behind a fledgling patient advocacy movement. They came to Toronto from across Canada this past summer to share their anger over a shared experience: of having their pain diminished or ignored by society and the healthcare system. These women are living with, and suffering from, uterine fibroids (UF) and similar debilitating conditions—and not being heard. In a safe, non-judgmental environment, these Read More…

    Tagged Under: ,

Patient Commando’s reaction to the movie “50/50”

Thanks to Entertainment One Group, Patient Commando received several passes to their latest release 50/50.

We quickly offered the passes through Facebook and Twitter until they were all gone. Yesterday we received the following from fellow Patient Commando, Sean McDermott on his reaction to the film:

Today, my daughter Kate and I went to see the movie 50/50. It features a lot of laughter and a heap of Seth Rogans colourful language and pot smoking ways, if you like that…and we did. The movie is a poignant examination of the manner in which family and friends react to chronic/terminal illness. Sometimes I wonder how Kate copes with all this challenge of me, her Dad having an endstage disease On the way out I was thinking how many moments I could relate to, and Kate said to me “that was a good movie for you and I to see together”. I smiled and was grateful for her love and support.”

Thank you again to Entertainment One for the opportunity to share this film with our community.

Social Media & Patient Centric Care

Michael Evans, Director and Staff Physician at St. Michael’s Hospital talks about social media and patient-centred care.

This interview was conducted by The Change Foundation during their Meeting of the Minds 2011 Conference: How to ACE the Patient Experience.

The Change Foundation is an independent policy think tank, intent on changing the health-care debate, health-care practice and the health-care experience in Ontario.

Video is also available on the Change Foundation website here.

“How to Live Before You Die.”

In his 2005 address to the Stanford University graduating class he told them that “death is life’s change agent.” Yesterday, the man who was one of the leaders of the information revolution and permanently changed the way our society shares and communicates information, left this world silent of the end-of-life experience.

He gave us tools to help us elevate ourselves beyond our own expectations of what defines us.  Yet at the end of his life, only a simple statement back on August 24 shared little.

It brings up the issue how even the most innovative of us are still trapped by society’s taboos, by topics that we haven’t got the courage, understanding, or education to talk about comfortably.

Whether its end-of-life or chronic illness, the notion of sickness is something we still don’t have an open dialogue about. People whose bodies are suffering are stigmatized by their conditions. And public behaviour ends up marginalizing the individual.

It would have been interesting, no doubt, had Steve Jobs shared with us, even a minute portion of his experience with illness and impending death. How liberating might it have been if among all the billions of accolades that are coming out today, there would be one that recognized that a new dialogue and public discourse got started about the understanding of illness and death in our society.

As someone who has lived with a chronic illness for over 30 years I understand how deeply personal it is and the many difficult choices that patients are faced with. It will take work but I’m convinced that we’ll be able to share and listen to the experience of patients without fear, judgment, self-pity or shame.

In his Stanford address Steve Jobs spoke about looking back to connect the dots. Maybe in the future, we will see his words about death and change and understand how they might inspire a new level of conversation.

Cancer patients, survivors find truth in ’50/50′ | LA Times

In the new film “50/50,” there is a scene where cancer patient Adam, played by Joseph Gordon-Levitt, is on a gurney being wheeled into the operating room with his parents by his side. As the nurses take the 27-year-old away, he calls out for his mom like he’s a little boy. It’s an affecting moment, but for Matthew Zachary, it was particularly personal.

“That’s exactly what happened to me,” said the 37-year-old father of twins from New York City who was diagnosed withbrain cancer at age 21. “Literally I’m with my parents and they are wheeling me off to the operating room and I lost it. It was a horrible, horrible experience.”

For Heidi Adams, it was the scene at the dinner table between Gordon-Levitt’s character and his mother, played by Anjelica Huston, who wants to move in to help care for him.

“I remember that conversation with my mother, that struggle at that time in your life when you are discovering your independence, fighting for your independence and you are thrown back into this position where you need to rely on people, where you need your mom. It’s very disorienting,” said Adams, 44, from Austin, Texas, who lived with her parents for 2 1/2 years when she was 26 and undergoing chemotherapyand radiation for bone cancer.

Making a film about a deadly disease, then adding in strong comedic elements as “50/50” does, would seem to be a recipe either to offend with its audacity or insult with a sappy portrayal. A few other recent films about illness, such as Judd Apatow‘s “Funny People” and the Anne Hathaway movie “Love and Other Drugs,” have tried to walk the line between dramaand comedy, but reactions were mixed. Yet the reception among those who might be most sensitive about “50/50” — cancer patients and survivors, particularly young adults — has been surprisingly positive.

“The first thing we had to do was to make sure the cancer community was going to embrace the movie. You don’t want to put a movie out there that they are uncomfortable with,” said Nancy Kirkpatrick, president of marketing for Summit Entertainment, the studio behind the film. “We did a really broad screening program so I was expecting to get the emails saying, ‘How can you be so insensitive?’ But we didn’t get any of those.”

“50/50” is based on the screenwriter Will Reiser’s fight against spinal cancer at age 25, and the story is resonating with those who are too old to be considered pediatric oncology patients but too young to share much in common with older adult cancer patients.

While there is a slew of resources targeted at child and older adult cancer patients, those who fall in between, like Reiser, say they’re often at a loss. The medical establishment, they say, is only beginning to recognize their specific needs. This group tends to be the most transient, and the most uninsured. They have specific psychological, physical and financial issues unique to their age.

“Will’s story is the archetype for the story of how much it [stinks] to be sick in your 20s and treated as if you’re in your 60s,” said Zachary, who founded the I’m Too Young for This! Cancer Foundation as a resource for young adults affected by cancer. ” ’50/50′ was torn from the pages of my life and I’ve heard that quote from hundreds of other young adults who have seen the film. Whether it’s the doctor who doesn’t make eye contact or the overbearing mom who wants to help, or the girlfriend who abandons you, or the manic hysteric fits of rage, all of it is so accurate.”

Reiser said he never intended to become the poster child for young people with cancer but he is very gratified that his retelling of his experience has connected with so many others in similar situations.

“We were just trying to tell a story that was personal to us and to tell a good story,” said Reiser, who produced the movie with his longtime friend Seth Rogen, who co-stars in the film and was an active part of Reiser’s support group during his treatment. “The fact that it’s starting a broader conversation, and is helping people who are going through a similar situation, that is really validating.”

Summit initially instituted a series of word-of-mouth screenings with Stand Up to Cancer and Lance Armstrong’s LiveStrong foundation more as a defensive measure than anything geared toward advocacy.

But they were pleasantly surprised when they heard from people like Adams, who started her own young-adult cancer foundation and co-wrote a guidebook for young adults with cancer before merging her efforts with LiveStrong, where she now serves as the foundation’s senior director of engagement.

“I walked out of the screening and wrote an email to Jonathan [Levine, the film’s director] thanking him for finally representing my experience in a way that was real, didn’t pull any punches or dissolve into something soft and politically correct.”

Dr. Stuart Siegel, associate director for pediatric oncology at the USC Norris Comprehensive Cancer Center, has partnered with Dr. Debu Tripathy to start an adolescent/young adult program at the facility. It’s a burgeoning area of research, practice and training that he says came to the forefront in 2005 when the national tumor registry published data indicating that this group of patients was not showing much improvement in survival rates, compared with children and older adults.

Siegel, who moderated a post-screening panel with Reiser, Rogen and co-star Anna Kendrick at USC last month, said the film could serve as a useful tool.

“All of the medical students and faculty I talked to after the screening thought it was a wonderful training film, which is unusual for a Hollywood movie. But it really did hit virtually all of the key issues,” said Siegel, referring specifically to how the film addresses interpersonal relationships, sexuality, the pain associated with treatment, and losing friends made during chemo sessions, among other topics.

“The only issue Will didn’t hit was the financial issue, which I asked Will about,” added Siegel. “He told me he had to write his script to pay all his medical debts.”

By Nicole Sperling, Los Angeles Times October 6, 2011

What GPs can learn by listening to patients | The Gaurdian

I was nervous at first and wasn’t sure what to expect. I write this having just come back from our first patient participation group (PPG) meeting. After this inaugural face-to-face, I came home feeling that the disparate group of our patients who made an effort to give up their time were generally pleased that they had attended.

I was really glad to meet them all outside the consulting room yet still on practice turf, managing to listen to their views. And in return I gave them some insight into the workings of their local surgery as well as a whistlestop tour.

Every patient who attended had two things in common – health needs and being registered at our practice. It’s only right that they get to voice their opinions, and that we as a practice can adapt to their needs and provide them with an even better service.

The government has encouraged practices to form such groups as part of a DES, or directed enhanced service. These are – in theory – optional initiatives which reward practices in return for work that improves the quality of patient care.

The themes which came up were no surprise. Access featured heavily. What is the best way to access the service that you need exactly when you need it? How long is it reasonable to wait for an appointment? What constitutes something medically urgent? Talking through some real life examples brought things to life in a way which I had never experienced before. And I applaud the group for volunteering their experiences.

It’s only by looking at these stories, analysing the pathway of exactly what happened and how it could be improved, that any headway can be made regarding changing practice systems and protocols.

Most doctors and patients would agree there is a lot of second guessing about how the other thinks. Often people get experiential snippets from friends who have tales as patients, or moans about the pressures of work from the odd doctor friend. But tonight it was all out in the open. We were all part of the same team, able to drill down on some issues which looked at the service as a whole, not just from one viewpoint. We were trying to work together to solve problems.

For instance, at one point there was mention of whether we offer ‘double appointments’ rather than rushing to squeeze everything into ten minutes. “Of course …”, I said, “but …” , the point being that if everyone asked for these all the time we’d really struggle in terms of capacity, so there needs to be some selection criteria around being allowed to book double appointments.

There was a real sense of unity by the end, and I think there was a realisation that patients need more input and ownership when it comes to their practices, and that providing a decent primary care service is actually quite a complex business.

We live in a world of diminishing budgets and increasing demand, which unavoidably leads to both implicit and explicit rationing. We touched on this thorny topic, as well as other broader issues around general practice itself – continuity of care, part-time clinicians and self-care which will become a big feature of future primary care as it is in some other European countries.

I am looking forward to our group evolving and generating ideas and solutions, and I hope by March next year we will have made some positive changes which will benefit both the practice team and our patients.

My hope is that people across the land get involved with their PPGs. And it doesn’t necessarily mean attending lots of meetings. Patients will be able to have their say via structured surveys which may be online or on paper.

Most importantly, all patients are to be represented by these groups and I was glad that our practice manager re-iterated this during the evening. Young, old, fit or infirm, we are all patients at some point in our lives, so we ought to seize this opportunity to discuss how best to make it as good an experience as possible. Originally posted on www.guardian.co.uk