Tag Archives: Supportive Care

Lincoln and Children on Remembering the Dead

Evening of Remembrance, City of Hope, March 28, 2018

(Gently edited talk delivered to the loved ones whose family members have died from cancer in the last year.)

Introduction

I’m here tonight, while officially on vacation — which may seem at first glance to be an odd way to spend my time away from work. Instead, I see it as absolutely appropriate to spend it with you, members of our City of Hope family. Like you, I have lost close members of my own family to cancer, including one just this past year, so I’d like spend a few moments of my life sharing my memories with you today. Not as a doctor, but as one of you.
I am reminded of my favorite President, Abraham Lincoln. Like me, he was a man who spent most of his formative years in the state of Illinois, in the state capital of Springfield. Nevertheless, his most memorable spoken words come from his few years outside of the land that proudly refers to itself as “The Land of Lincoln”.
In particular, I’m reminded of some of his words to commemorate the lives of those who died in battle in Gettysburg, Pennsylvania. In a similar way, we’ve all lost people who succumbed to their struggle against cancer.
Asked by David Wills, a lawyer in charge of planning activities, if he would give “a few appropriate remarks”, Lincoln gave his most iconic speech – in a mere 272 words, speaking for less than 3 mins.

This is always a reminder to me that much can be said is a few well-chosen words.

Ironically, within his speech, Lincoln told his greatest lie:

“The world will little note, nor long remember what we say here, 
but it can never forget what they did here.”

While we will never forget what Lincoln said, I hope you will forget what I say here tonight, but never forget what your loved one’s did in their lives. I their impact all around us, displayed proudly along the perimeter of this room.

Today is a day for us to reflect on our loved ones, those who didn’t get to see this day, and to remember those meaningful moments they brought into our lives. I have two members of life to reflect on tonight. I discuss them not to call attention to my own circumstances, but to join with you in reflecting on those we’ve lost.

 

Sharing My Experience

It has been almost 8 years since my father passed away from lung cancer. We had a relationship that was complicated, full of respect, but also including many differences of opinion that led to arguments – arguments that continued until the very end. At the time of his passing, I wrote about this, how challenging it can be for those caring for our loved ones when they are in pain, facing their final moments, struggling to be themselves:

“It’s been a couple of months since my father died. Sometimes I see him in my patients, especially the ones who seem defiant and defensive, those who are most skeptical of my care. Other times, I recognize his struggle in my cancer later in life older patients in my clinic who are dealing with the challenges brought on by cancer.”

“These days, I am more careful to tell my cancer patients and their families about the confusion and danger that may occur…And I’m more insistent about getting a [supportive care consultation for them. I try harder to prepare patients and their families for the possibility of a [dangers in the hospital] and how to avoid them. I tell patients’ families that no matter how exhausting, they should make every effort to spend time with a dying loved one to avoid regrets afterwards. I encourage them to involve grandchildren in the conversation about death and disease. I remind myself that few families are ‘ready’ for their loved one to die, even when given ample notice.”

In general, what I noticed at the time, in when caring for a dying person, it is much more difficult to be a son (or a daughter or a spouse or a parent or a sibling or a lover) than a doctor, when someone is gravely ill and suffering. I try to never forget it, and my heart goes out to you.

This last year, my wife’s sister-in-law passed away from an aggressive colon cancer – she was in her early 40s. She and my brother-in-law have small children, overlapping in age with our own. As she was getting sicker, she felt unable to talk with them, to share in the last moments of her life. She also felt unable to talk with us, which was confusing. Yet is reminded me, again, that every experience of life, including its end, is an individual you one. We have to treat each experience as unique, not a part of a statistical distribution.

In the book, “When Breath Becomes Air”, Paul Kalanathi, a young neurosurgeon dying from lung cancer, explains: “My relationship to statistics changed the moment I became one.”

And children are often our best source of truth. I still remember by one, my older son Xander, who was 7 at the time asking uncomfortable questions.

“Is Grandpa going to die?” he asked me one day.
“Yes, I’m afraid so.”
“Because he can’t breathe?”
“Yes.”
“Like when Harrison couldn’t breathe?”

Uncomfortable silence. Harrison, one of his younger twin brothers, recently had been hospitalized for a severe asthma attack. We had had to rush him to the hospital one night.

“No . . . it’s . . . different,” I stammered. “Harrison has asthma, which we are treating with medicine. Grandpa has cancer, and we don’t know how to treat it.”

Our three young boys understood the situation at various levels. We tried to be honest without scaring them. I was constantly impressed by their adaptability, their honesty and their straightforwardness in offering questions, thoughts and feelings. We could all learn from them.

“So, Dad, Grandpa is going to die.”
“Yes, that’s right. But not for a while.”
“Will we still come visit after that to play with Grandma?”
“Yes. Are you OK with that?”
“Well, Grandpa wasn’t very nice to us anyway.”

Unfortunately, despite his best efforts, that was true. My father was a smart, hard-working, dedicated man who lived his life with serious intensity. But he wasn’t always “fun.”

 

Looking Back, Looking Forth

It is why we are so fortunate, at City of Hope’s Department of Supportive Care Medicine, to have Child Life services, experts in helping adults talk with children about cancer, about the process of having cancer. Our supportive care team is full of people who can help in so many ways. I am lucky to be the Chair of such a wonderful Department.

Returning to Lincoln, who summed up his famous address so aptly, focused on the survivors and looking ahead, a call to those among us who are left behind in the wake of a family member who has died. “It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us — that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion.”

It is perhaps appropriate that children are so often still asked to memorize these words for school. We can learn so much from our greatest President and our children.

And that’s how I’ve seen my role since then, to be devoted to the cause of helping bring meaning to people’s lives when they have cancer, to help their families, friends, loved ones and colleagues to cope with the losses, and to carry on the commitment to make everyone’s lives a little better.

Advertisements

Leave a comment

Filed under Aging, Books, Chicago, City of Hope, Civil War, End of Life Care, Lincoln, Palliative Care

Becoming The Standard of Supportive Care

August 2, 2017

 Meet William Dale, M.D., Ph.D., the New Arthur M. Coppola Family Chair in Supportive Care Medicine
William Dale, M.D., Ph.D., recently joined City of Hope from the University of Chicago, where he was an associate professor of medicine and section chief of Geriatrics and Palliative Medicine. He completed his medical and graduate school education at the University of Chicago, and his residency in internal medicine and geriatrics fellowship at the University of Pittsburgh. He is a board-certified geriatrician and palliative medicine physician with a doctorate in health policy.

Q: What brought you to City of Hope?

I knew of City of Hope primarily through my association with long-time colleague (Vice Provost) Dr. Arti Hurria. We both have keen interests in geriatric oncology. I also knew of the well-respected Department of Supportive Care Medicine here, which is a rather unique model that doesn’t exist elsewhere. Here, the department brings together so many aspects of comprehensive cancer care under one umbrella: palliative care, social work, psychology, psychiatry, patient education, patient navigation, volunteer services, and the Positive Image CenterSM – 13 divisions in all. It is very rare to have so many disciplines working closely together under one roof. Most places have to pull together multiple providers from several different places, but it makes perfect sense to keep the patient at the center of your care and to know they have a team around them. We do that.

Q: Many think that “supportive care” and “palliative care” are interchangeable terms. Are they?

Palliative care is a holistic specialty that focuses on maintaining a patient’s quality of life and managing their symptoms. Its focus is on maintaining a high quality of life throughout the cancer care journey, including when therapies aren’t available to control the cancer and the patient is nearing the end of life. Hospice care – caring for patients in the last six months of life – is often confused with palliative care. While hospice care is part of excellent palliative care, they are not the same. Supportive care is a broad-based patient care approach, while palliative care is a medical specialty that focuses on preserving quality of life.  Our department is inclusive.

Q: Tell me about your role as chair. What would you like to accomplish?

I envision supportive care at City of Hope being the top program in the world. We already have a unique world-class clinical program. What we haven’t had enough of is scholarship in supportive care, which we are building. I want to bring researchers here, which we’ve already started by recruiting a senior-level director of research we’ll be announcing soon. Also, we’ll have a new concentration on geriatric medicine – the care of older adults. Finally, I have a great interest in models of cancer care. Creating programs for optimally caring for vulnerable patients on a financial foundation of personalized care, integrating oncology and supportive care that is sustainable.

I want City of Hope to be THE place, the standard for supportive care programs.

I want City of Hope to be THE place, the standard for supportive care programs.

Q: How did you come to choose a specialty in geriatric palliative medicine?

I’ve always liked older people! I remember caring for them when I was in an intern in internal medicine – when my colleagues avoided the complex older patients with multiple problems, I liked the challenge these patients presented. In my VA clinic in Pittsburgh, I loved hearing fascinating stories from the old World War II vets. Older people can have quite a few health problems already: They may have several diseases – hypertension, cardiovascular issues, diabetes – and then you add cancer on top of that – it’s a lot to deal with. There are unique challenges and considerations when taking care of this age group.

Q: How do you expect to be involved in research in your new role?

I have always been interested in medical decision making and health services research, which we will build at here. Much of the data we currently have from cancer treatment trials comes from a younger, healthier set of patients. While there are a few older patients enrolled, they are largely healthier patients who don’t represent the majority with cancer. So we often don’t know how a less fit older patient will respond to most therapies – we just have to guess, often causing lots of side effects. We need research that will allow us to make more informed decisions for our older patients, based on better data, and to using interventions and a system of care tailored for them. If we can target interventions that get results that truly improve their functioning and quality of life, then they aren’t in the hospital as often. The older, sicker patients are the ones who currently use the most resources, and tend to be the most expensive – for them, us and society. How can we better care for them? Often, supportive care interventions are the answer.

Q: Is there research you are leading now related to this?

Arti (Hurria) and I are continuing to collaborate on several studies, including a recently submitted National Institutes of Health grant that would build a nationwide research infrastructure for older patients, which also includes my City of Hope colleagues in supportive care (Executive Director Matthew Loscalzo, L.C.S.W., the Lilliane Elkins Endowed Professor in Supportive Care Programs), nursing (Nursing Research Director Betty Ferrell, Ph.D., R.N.), and aging science (Population Sciences Professor Mark LaBarge, Ph.D.). We want to get better, more representative data for these patients who have the highest burden of cancer and other diseases, as well as mentor young researchers to enter the field. Along with the new Center for Cancer and Aging here, which Arti, Mark and I lead, we want City of Hope to be the national leader in this type of research. They can come to City of Hope, and we would have some national level resources we can give them access to.

Q: Did you always want to be a doctor?

As a kid growing up in rural Illinois, with animals always around both inside and outside the house, I wanted to be a veterinarian. But, I’m ultimately a people person, and I wanted to make a difference in people’s lives, so I became a doctor. I’m also a bit of a policy wonk about health care, so I earned a Ph.D. in health policy. Melding my clinical love of older adults with my research love for medical decision making and health services, I look forward to building a department that brings this together.

Q: How are you liking LA so far?

Although I’ve spent my entire adult life in the Midwest, almost entirely in Illinois, I am loving Southern California! My very first job as a 16-year-old in Illinois was as a lifeguard. I loved being at the pool all summer, and spent seven years doing that. During that time, my favorite bands were The Beach Boys and The Eagles, and I fantasized about living in LA!  When this job came open at City of Hope, it was a dream come true from my youth.

Leave a comment

Filed under City of Hope, Decision Making, Geriatric Oncology, Geriatrics, Health Policy, Palliative Care