Media Landscape Opens Opportunity For Earlier, Better End Of Life Care: ASCO’s Inaugural Palliative Care Symposium

Media Landscape Opens Opportunity For Earlier, Better End Of Life Care: ASCO’s Inaugural Palliative Care Symposium

Posted on Saturday, October 25th, 2014 at 7:04 pm by lifemediamatters


Dr. Anthony Back

The prevalence of end of life decisions in current media and literature provides an opening for physicians to prompt conversations about the subject with patients, said Dr. Anthony Back, a Seattle Cancer Care Alliance medical oncologist, in remarks to the Palliative Care Oncology Symposium in Boston. Before beginning such difficult dialogue, however, he offered frameworks to facilitate end of life conversations both early and later on in a patient’s disease trajectory.

The Symposium was the first such hosted by the American Society of Clinical Oncology to promote discussion and integration of palliative care- a medical specialty designed to address physical, emotional and psychological symptoms of disease. The meeting drew an international audience of medical, radiation and surgical oncologists along with nurses, social workers and physician assistants.

We have to role model the developmental pathway to wanting to do this, to learning to do this, to becoming a ninja.

“This is a window of opportunity to get in the public dialogue in a really public way,” Back said during a session addressing the skills required for optimum end of life care. Back pointed to The New York Times’ widely-circulated coverage of Joseph Andrey and his daughter’s struggle to honor his wish to die at home. Back also outlined social efforts underway nationwide as a result of a project that began in his home of Seattle, Death over Dinner, along the success of physician Atul Gawande’s new book, Being MortalBack helped launch Vital Talk, a nonprofit aiming to help foster better doctor-patient communication.

“This reflects the work done over the last 20 years that set the stage for this discussion,” Back said. “Being Mortal wouldn’t be on The New York Times’ best-seller list if not for the work you are doing.”

He emphasized, however, that work remains to help physicians charged with navigating patients through the complex medical decisions they may face as they approach the end of their lives. “The task for physicians is the question of ‘how do we get to telling patients that we will give them an extra layer of support to talking about the really tough stuff?’” Back said.

Communication, he warned, is a learned expertise that must include frank, explicit discussion about what may happen when curative treatment options are no longer available. “We have to role model the developmental pathway to wanting to do this, to learning to do this, to becoming a ninja,” Back said to laughter and applause.


Physicians miss opportunities to educate patients about what may be ahead in one of three ways, he said: 1) in thinking “bad stuff won’t be quite so bad” if you don’t talk about it, 2) by delaying discussion about “bad stuff until you absolutely have to,” or 3) in thinking that “cutting to the chase” will save time and decrease patient distress.

Those approaches are faulty, Back warned, and asked the audience to consider how they may move such conversations “upstream” in ways that will not “completely freak everyone out.”

For end of life dialogues occurring early on in a patient’s illness- the optimal time for such conversation- Back offered the framework P.A.U.S.E:

P.A.U.S.E. for early end of life dialogue
  1. Pause: As “time” is often cited by physicians as a barrier to facilitating what can be a lengthy and complex discussion, they should stop to consider that this conversation may be more important than one about further treatment options.
  2. Ask permission: Physicians should ask for permission to have this conversation and explain its importance. “Could we take a moment?” or “This will help me guide you,” are two conversation-starters that prove empowering to the patient.
  3. Suggest a surrogate: Patients who do wish to engage in advance care planning are often thwarted by confusion about proxy selection. Physicians should ask simply, “Who is the person who knows you the best?”
  4. Expect emotion: The many emotions that accompany such conversations often add to the time required to facilitate dialogue, further necessitating the need for physicians to “pause.” Doctors must empathize and realize the topic is a tough one for everyone in the room.

For end of life discussions taking place later in a patient’s disease course, Back offered the framework R.E.M.A.P:

R.E.M.A.P. for late end of life dialogue
  1. Reframe: Physicians are obligated to communicate that the “status quo” is no longer working. However, they often face tough follow ups: “There’s another chemotherapy after this one, right?” “I only want to talk about positive things,” or “I want to be aggressive.”
  2. Expect emotion: In response to these follow ups, there is even greater urgency to empathize with patients from the start
  3. Map: The conversation should turn to what a patient finds most important and to his or her goals. Physicians should explore patients’ interests, ask to see photographs and inquire about special family occasions or milestones.
  4. Align: Physicians should ask about a patient’s values and the beliefs guiding any particular goal.
  5. Plan: The final step for physicians taking part in late end of life dialogues is to match any particular treatment to a patient’s stated values.

Back acknowledged that the execution of a “P.A.U.S.E.” or “R.E.M.A.P.” conversation is often met with resistance. “Patients often say ‘it doesn’t feel like time to give up,”” Back said. “Assure them that ‘I’m not giving up on you.’”

Nursing: A Vital Role In End Of Life Care

Posted on Tuesday, July 15th, 2014 at 11:13 am by lifemediamatters

Linda Norlander hopes to empower nurses through her latest book, To Comfort Always: A Nurse’s Guide To End Of Life Care, Second Edition. Norlander, a registered nurse and award-winning author, argues that nurses play a vital role in helping provide compassionate, effective end of life care to the seriously ill.

Norlander, recipient of a Robert Wood Johnson Foundation Executive Nurse Fellowship, describes one of her earliest and most difficult nursing experiences in the opening pages:

Thirty years ago when I was a novice home care nurse, I was assigned to Margaret, a 70-year-old woman with terminal liver cancer. She lived with her husband and a disabled son. For five months, I struggled in vain to make her comfortable, to control her pain, to relieve her physical symptoms. I watched her diminish in front of me, her skin breaking down, her eyes glazed with pain, and I felt a growing helplessness. Looking back, I know she sensed my helplessness. I remember walking into her bedroom one day with dread. She was comfortable only in the fetal position on her left side. It was agony for her to be moved. Her husband’s eyes said, “Do something.” In desperation, I held her and asked, “Is there something more I can do for you?”

“No,” she whispered.

I didn’t believe her.

Back then, I didn’t know what I didn’t know. I didn’t know that her pain and symptoms could be managed, that dying is multilayered and multidimensional, and that Margaret’s personal, family, and spiritual suffering could be addressed. I didn’t know the crucial role that nursing could have played in helping Margaret die peacefully and comfortably. I wasn’t truly present for Margaret or her family.

“I chose to use that story because it was very close to me. I really didn’t know how to care for her, and the idea of the book is to know what you don’t know,” Norlander told Life Matters Media. “The book is a primer for nurses who care for the dying. At that time, I really didn’t know how to manage pain or deal with family. It was a turning point.”

NURSESGUIDENorlander said she believes nurses often provide the best “special care” and holistic medicine to the seriously ill and their families, partly because they provide hands-on care. “Physicians are excellent at disease and disease pathology, but I think nurses are better at holistic care, and nurses are good at developing relationships,” she said.

Published through the Honor Society of Nursing, Sigma Theta Tau International, the revised guide features expanded content on chronic illness, dementia, ethics, grief and suffering. The first edition was released in 2008 and won the Journal of American Nursing Book of the Year award in the medical-surgical category.

“Twenty years ago, when I first got into hospice care, there wasn’t even curriculum or nursing schools on how to care for the dying,” she added.

When asked about any advice she would give to prospective hospice nurses, Norlander said young nurses should be prepared to work diligently and face emotional situations.

“It’s hard work. It’s very rewarding work, but it’s hard work. If somebody wants a job where they punch in at 8 o’clock and punch out at 4:30, this would not be the way to go,” she offered. “I’m not saying that nurses don’t have boundaries, because they absolutely must have boundaries. But sometimes you just can’t put it aside. You have to have a passion for it.”

Facing Alzheimer’s Together

Posted on Saturday, March 8th, 2014 at 9:53 am by lifemediamatters


Carrie and her father, Henry George Jackson Jr.

Carrie Jackson spent the better part of her twenties caring for her ailing father who was suffering from severe Alzheimer’s disease. As her father’s primary caregiver, Carrie spent years watching his health decline and managing his care.

Henry George Jackson Jr. died in 2012, after nearly three years in hospice care. Carrie currently serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and she is on the Junior Board of the Alzheimer’s Association. She contributed an essay set to be published next month in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. 

Why did you choose to share your experiences of caring for your father?

Jackson: Alzheimer’s is the sixth leading cause of death in the United States, and no one knows that. It’s also severely underfunded.

People think it’s a memory disease, but it’s so much more. It’s language, it’s perception, it’s judgement, and it ultimately shuts down the entire body. End-stage Alzheimer’s is non-verbal, requiring total care, involving hallucinations and terrors, and people not being able to move their limbs. It’s a horrible, horrible disease.

Caring for dad really changed my life. I was in my mid-twenties and my friends were dating and going on job interviews and getting married and having kids, and I would always be like ‘I have to leave early to go to the hospital.’ I was his advocate, and he really didn’t have anyone else. So, I feel that I need to share.

What is the hardest part of caring for an individual suffering from Alzheimer’s or dementia?

Jackson: There becomes less and less that the person afflicted can do for themselves. Early-stage is really difficult because they argue with you and hide things. When I first started taking care of Dad, I looked at his check book and I found that he had not paid rent in three months. He was making donations to anyone who would solicit him, so donations to the Republicans, to the Democrats, and even to the Ross Perot Party.

I remember there was a big fight when I had to take his keys away after he failed his driving test for the third time. That was the only time we almost got into a physical altercation.

It was very hard telling him he could not go for walks by himself anymore, because he might not know how to get home. He also had some colorful words that he would use on a regular basis while on the streets of Evanston. He developed an irrational fear of sprinklers, so every time he saw one he would swear at it and at the person who put it there. People didn’t understand that it was the disease talking, not him.

Henry George Jackson Jr. died in 2012. He was a celebrated WWII veteran.

Henry George Jackson Jr. died in 2012. He was a decorated WWII veteran.

What advice do you have for adult children caring for seriously ill parents?

Jackson: You have to find support, you have to. It sounds so cliche. It helps to relate to someone going through a similar situation. Sometimes you don’t need an answer, you just want someone who will listen to you, someone you can vent to and be like ‘this sucks.’

After witnessing your father’s decline, do you fear Alzheimer’s?

Jackson: Alzheimer’s is my biggest nightmare. I am just absolutely scared of it.

At work we try to create moments of joy for those facing it. I do Alzheimer’s training for the new volunteers, and I tell them that a beautiful thing about the disease is that the person afflicted has no recollection of the past and the future doesn’t mean anything. If you say lunch is in 20 minutes, it doesn’t mean anything. They live and are truly engaged in the moment. I try to make that moment positive; the best thing we can do is make them happy.

Read an except from her essay here

Canada: A National Dialogue About End Of Life Care

Posted on Saturday, February 22nd, 2014 at 8:05 pm by lifemediamatters

Dr. Louis Hugo Francescutti

Dr. Louis Hugo Francescutti, president of the Canadian Medical Association, opened the evening

Maclean’s newsmagazine and the Canadian Medical Association hosted the first in a series of discussions about the importance of end of life care Thursday in St. John’s, Newfoundland. A panel of health care experts touched upon the importance of palliative medicine for the terminally ill and the lack of advance care planning across the nation.

“Nobody wants to talk about death, but we all know we are going to face it,” said Dr. Louis Hugo Francescutti, president of the Canadian Medical Association. Francescutti recounted the recent decline and death of his mother to colon cancer, an event he said taught him how to die. “When she got into what she would call ‘heaven,’ a palliative care facility in the West Island of Montreal, she kept saying, ‘is this possible?'” Francescutti said the staff supported his mother by also supporting her family.

“She always used to grab my hand and say, ‘feel my skin,’” he said. “The staff was so attentive to making sure she always had lotion on her hands. She left feeling that she had come to the final chapter in a place that was taking care of her needs. That is palliative care.”

Dr. Susan MacDonald, president-elect of the Canadian Association of Palliative Care Physicians, offered her experiences caring for seriously ill patients. “People think that I look after the dying, but everybody I look after is living,” she said. “I work to provide really thorough care for patients, so that I can help manage the symptoms they are having, both the physical and spiritual. It is not a sad job, it is a wonderful job.”

MacDonald said one of the biggest misconceptions about palliative medicine in Canada is that it involves only “handholding” accompanied by aggressive medicine.

However, most Canadians do not receive such compassionate care at the end of life, because palliative care is only available to some 30 percent of Canadians that need it. Although the vast majority of Canadians say they believe it is important to have clear conversations with loved ones about the care they want at the end of life, only a small minority have done so.

Jeannette Holman Price

Jeannette Holman Price spoke about the importance of advance care planning

“It is a conversation that we need to have, but it is also a conversation we need to have universally, not just with persons who have disabilities or are ill,” said Jeannette Holman Price, past president of the Brain Injury Association of Canada. In 2005, her daughter was run over and killed by a snow removal truck; her son was seriously injured. Price said that tragic event inspired her to spread the message of the importance of advance care planning.

“I lost a child, and I lost her quite suddenly, so advance care planning wasn’t an issue for us, she was taken from us without warning,” she said. “But since that time, I have witnessed other families who had to bury their young loved ones, and they’ve had the opportunity to plan, to discuss with their loved ones what is important to them, what they wanted in care. All of us should be planning.”

Wheelchair Blues

Posted on Saturday, December 28th, 2013 at 10:15 am by lifemediamatters

Image Courtesy WikiMedia Commons

Image Courtesy WikiMedia Commons

“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for us guys. At least in that situation, I don’t have to be honest.”

Michael is 52. Four years ago, he was diagnosed with multiple sclerosis. In the past two years, his disease process has escalated to the point in which he has become confined to a motorized wheelchair.  Recently, he has had multiple MS-related setbacks that have kept him bedridden for several weeks at a time.

Things have become so difficult that several months ago, Michael was forced to sell his once-thriving law practice. The few hours of work he could manage each week there proved more frustrating than fulfilling.

Mike is often depressed. He continually repeats his self-defeating mantra: “I’m not half the man I used to be.” The superhuman support of his second wife Maryanne, his son Kyle and his beloved Seattle Seahawks are the only things that prevent Michael from killing himself.

The first time I met this couple, an exasperated Maryanne tearfully reported how Mike’s smoldering rage and bouts of sullenness terrorize the family. “I love him, but he’s gotta get off his pity-pot or I’m gonna walk, and take Kyle with me.” Mike sheepishly acknowledged his disruptive behavior. His ruggedly handsome face often distorts with shame. “It’s not me. It’s this damn MS. I just can’t seem to get it together. I feel like such a failure.”

When Mike and I have some time together, I broach the topic of sex. Mike blanches. I start by asking him some very pointed questions about his intimate life with his wife.

Mike responds:

“I’m not used to such a frank discussion about sex. I’m more comfortable with the locker room bravado that passes as sex talk for guys. At least in that situation, I don’t have to be honest. This is very intimidating.

I don’t want to talk about this because I’m afraid you’ll want to know how a gimp like me does ‘it.’ I would have to tell you that a gimp like me no longer does ‘it’ because he can’t get it up anymore.

I would probably then have to tell you how frustrating it is for me not to be able to make love to my wife, and how this is a source of constant friction between Maryanne and me. She accuses me of throwing out the baby with the bathwater. All she wants is for us to be close.

So you see, if I told you all these things I would really be embarrassed. So I’m not going to say anything at all.”

“I see,” I responded. “Do you really see yourself as a gimp?  Or is that just a term of endearment you use for yourself?”

“What do you think? Just look at me. I’m one fine specimen of virile manhood, wouldn’t you say?”

Mike turns bright red. I can’t tell if it’s rage or embarrassment.  Maybe both.

“Ok, Mike, have it your way. Maybe you are a gimp. Although I wouldn’t have guessed by just looking.”

I tell Mike about another client I had years ago. His MS was even more advanced than Mike’s. His wife claimed that despite being a very large man and being bedridden, he was a remarkably good lover.  She said he had a vivid imagination and an exceptionally talented mouth. He was affectionate and gentle, and there was absolutely no hint of a chip on his shoulder. My former client used to say that his pleasure came from giving pleasure to others.

Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence.

Mike apologized. “I’m not myself today. Or maybe this is what I’ve become. I know my wife and son think so.”

“So is all of this rage just about being unable to have an erection?”

I tell Mike that many women don’t care if their partner has an erection or not. While losing the ability to have an erection may be a humbling experience for a guy, his female partner may have an altogether different experience. For her, it may signal the possibility of some really good sex.

I ask, “How do you feel about your oral sex technique, Mike?  If Maryanne wanted you to pleasure her, would you be comfortable doing that?

I also ask if he is able to communicate his need for intimacy to Maryanne, and if there are any specific issues that prove to be barriers in the way of him asking for what he needs.

“We stopped talking about sex about the same time I got sick,” Mike responds. “Actually, we never really discuss it at all. Maryanne brings up the topic, I get angry, and she gets hurt.  That’s how ‘discussions’ about sex go in our house.”

Mike tells me that he wishes he could let his wife know how ashamed he is, not for being such a bully, but for being a coward. How we can’t seem to get past saying “I’m sorry.”

I ask if he’s talking to his doctor about his concerns.

“Nope, I just figured there wasn’t anything to talk about.  Besides, it’s too embarrassing to admit.”

That’s something I tell Mike he should reconsider, and I then give him this advice:

“First, begin a dialogue with Maryanne. Let her know that you are serious about working through your problems.

Second, contact your doctor as soon as possible and initiate a frank discussion. A great deal of progress has been made recently in understanding and treating male erectile dysfunction.

Most men occasionally experience the inability to have an erection, but repeated problems, whether they are organic or situational, constitute what was once referred to as impotence. Men with chronic problems are often too embarrassed to ask for help, and they may not have the impetus to do so. Statistics on how widespread this concern is among guys is hard to come by.

Getting an erection is a process that combines complex emotional and biological functions. So it’s clear that either a physiological or psychological problem can interfere in the arousal stage of the sexual response cycle.

For example, a relationship problem, depression, anxiety, prescription medications, excessive alcohol consumption, a hormone imbalance, cardiovascular disease, a neurological problem, being overweight, some cold and allergy medications or a poor diet can contribute to arousal dysfunction.

Major breakthroughs in treating erection problems were made by a chance discovery in the mid 1990’s. A researcher studying the effects of a new heart medication noticed a remarkable side effect in some of his male subjects…erections. When Viagra hit the market, it revolutionized erectile dysfunction therapy.

It is important to note that this medication, as well as all the other erectile dysfunction medications out there, are ‘erection enhancers’ not ‘erection inducers.’ Without proper stimulation, these medications will not cause an erection on their own.

There are some reported side effects to these medications and one can only get them by prescription, so talk to your doctor as soon as possible.

There are options. Stop thinking about what used to be, and start working at finding out what is currently possible. There is still no need to go without partnered sex and pleasuring. There are erogenous zones all over and in your body.

Your erection-centric sex life maybe over, but there is so much more available to you if only you give yourself and Maryanne a chance to make the discoveries. How much time do you have left? Don’t let this issue continue to contaminate your marriage and short-circuit the intimacy that is still available. Maryanne deserves better, and so do you. I’ll continue to be available to you as a coach and guide, if you wish. Because there’s no need to go through this alone if you don’t want to.

Now get out of here, and make something pleasurable happen.  You won’t regret it.”