Archive for September, 2012

Cambia Health Foundation honors palliative care pioneers

By Angela Hult, Cambia Health Foundation

“If we want to transform something as huge as health care, we have to think big. We need to change the way the people we love are dying.” –Ellen Goodman

That’s what Pulitzer Prize-winning columnist Ellen Goodman told the crowd at last week’s Cambia Health Foundation Sojourns Awards luncheon in Seattle. Goodman, who co-founded The Conversation Project, an initiative to encourage people to talk with their loved ones about their care preferences at end of life, gave the keynote address at the luncheon.

At the event, the Cambia Health Foundation honored five Northwest palliative care pioneers for their vision and innovation in the field of palliative and end-of-life care. Each of the individuals received a $50,000 Sojourns Award in recognition of their accomplishments and as an investment in their future work.

Through programs such as the Sojourns Awards, Cambia Health Foundation is committed to improving access to and quality of palliative care, recognizing and advancing leadership and innovation, and facilitating an open dialog about end-of-life issues. The foundation also provides grants to organizations working to advance palliative care in their communities.

2012 Sojourns Award Winners

  • Patricia Berry, Ph.D., APRN (Salt Lake City, Utah): Helping nurses learn how to manage a patient’s pain and provide top-notch end-of-life care is University of Utah nursing professor Dr. Berry’s specialty. She also helped found the first hospice in the Intermountain West.

  • John Forsyth, M.D. (Medford, Oregon): A pioneer in the field of palliative care and the founder of a coalition called Choosing Options, Honoring Options, Dr. Forsyth has spent the last four decades encouraging Southern Oregonians to talk about their wishes and preferences for end-of-life care.
  • Carolyn Nystrom, R.N. (Ketchum, Idaho): As the executive director of Hospice and Palliative Care of the Wood River Valley, Nystrom provides quality end-of-life care for rural Idahoans. Thanks in large part to her efforts, more than 90 percent of everyone who dies in Blaine County have the support of hospice care.
  • Darrell Owens, Ph.D., DNP, ARNP (Seattle, Washington): After observing serious gaps in care, Owens, the director of outpatient palliative care at UW Medicine’s Harborview Medical Center, launched one of the first clinics in the nation to combine primary and palliative care for low-income patients.
  • Kathy Perko, P.N.P. (Portland, Oregon): For the director of the pediatric palliative care program at OHSU Doernbecher Children’s Hospital, caring for seriously ill children is her calling. Perko is in the process of starting a pediatric palliative care telehealth program for seriously ill children in rural Oregon.

Do you know a person or organization deserving of a Sojourns Award? Nominations for the 2013 Sojourns Awards open on November 1, and close on March 1, 2013.

Angela Hult is the executive director of the Cambia Health Foundation. Learn more at or @CambiaHealthFdn on Twitter.

The Personal Caring Initiative: A Transformative Approach to Palliative Care in a Regional Medical Center

In a recent blog post I wrote about the Mayo Transform conference awarding The Personal Caring Initiative with an iSpot award to showcase our work in providing personalized care to seriously ill people and their loved ones. This initiative includes the development of a palliative care service line, however we have taken several deliberate steps to engage the community and region of our regional medical center. This blog post shares the premise and the strategies that have served to elevate The Personal Caring Initiative to a transformative approach to caring for seriously ill people in our communities. We have attempted to change care and culture.

Serious Illness is Changing
The people we are privileged to care for through the services of Mayo Clinic Health System are living with multiple serious illnesses within the communities we serve. Several studies have shown the current health care system is fractionated and inadequate to address the needs of persons and families dealing with serious life threatening illness. Palliative Medicine is the only board certified specialty whose sole aim is to as a team provide the care that seriously ill persons tell us they want, namely, personalized care.

The Future is Upon Us
In times of declining reimbursement, demands of quality care, and more ill people, we must partner with our community resources to transform the care of seriously ill people of our communities to achieve increased quality of life, provide low burden excellent care while at the same time being more efficient. Unlike any other medical teams caring for people with serious illness, palliative care, has the skill, role and time to care for people with serious illness and people who may be dying. In fact, people like you and me with lung cancer live better and longer when receiving palliative care in addition to oncology care from the time of diagnosis as compared to similar people only receiving oncology care. As a health system, how do we insure the availability of dedicated palliative care services and enrichment of palliative care skills of our health care professionals? How do we then transform our faith leaders, our attorneys, our medical colleagues and our educators in service of people and families in our community living with a serious illness?

The Road to Transformation
Committed to the care of our most frail and seriously ill patients and their families, the southwestern region of MCHS, has strategically introduced a paradigm shift in caring for seriously ill people and their families. We have
1. initiated a fully staffed and professionally trained palliative care team serving the region clinically, educationally, and scholarly.
2. established a regionally represented palliative care community consortium with key stakeholders from the communities within our communities; Business, Education, Faith, Long Term Care, Pharmacy, Volunteers, and Elder Care.
3. created a position of a palliative care director of community engagement to lead the consortium and build relationships with key stake holders region wide.
4. partnered Palliative Care and Development for Philanthropic support.
5. initiated an Advance Care Planning Online Resource Center launching with public forum viewings of the documentary Consider the Conversation
6. developed the Mayo Clinic Health System Palliative Care Specialty Council with guidance from national mentors.

October marks the second anniversary of The Personal Caring Initiative and we are delighted with the changes we are experiencing in our health system. The immediate future entails increasing clinical staffing to accommodate patient demand and additional community and region wide initiatives to improve the care of seriously ill people.

Cory Ingram, M.D.
Assistant Professor of Family and Palliative Medicine
Mayo Clinic, College of Medicine

Medical Director – Palliative Care
Chair of the Palliative Medicine Specialty Council
Mayo Clinic Health System

Quality Measures─ Where’s the Compassion?

As the field of Hospice and Palliative Medicine grows up and integrates into mainstream medicine, we find ourselves increasingly focused on building the evidence base for our practice and developing quality measures that will drive the best outcomes. That’s a noble endeavor, but as we struggle with the science, we run the risk of losing touch with the heart of our work. What drives us to run toward the medical failures, the suffering, the dying and the bereaved when most of medicine has been running the other way? Many would say it’s a call to compassion.

We remember the patients who taught us something special about how we can make a difference as healthcare professionals. Cicely Saunders never tired of telling the story of David Tasma, the patient who became “the window” in her hospice. I treasure the memory of one of my first hospice patients, a 50 year old male hairdresser who was dying of lymphoma in our inpatient unit. I had admitted him expecting to tune up his pain meds and send him home as good as new, but he started into an accelerating daily decline. I felt it was my duty to break the bad news to him that his time was short. I sat at the head of his bed, leaned in and softly listed all the signs that he was getting worse. His sister sat at the foot of the bed in silence. He nodded his head and listened. Suddenly, he reached up with both hands, grabbed my head and gave my bald spot a big rub. After a moment of shock, his sister and I burst out laughing. He grinned and said “I know─ it’s OK.” He died comfortably at home a few weeks later and I went to the wake. His sister introduced me to the rest of the family as the doctor whose head you rub for good luck. They lined up and took turns rubbing my bald spot and we all laughed. He taught me that sometimes just being myself is worth more than all my medical expertise. How do you develop an evidence base around that practice? How do you capture that positive outcome in a quality measure?

As we parse out the components we hope will define quality palliative care, we have to be careful to preserve the whole experience. When I was an English major, I explicated my share of poems, but analysis of the bits and pieces never came close to capturing the beauty of the whole. As Wordsworth wrote:

Sweet is the lore which Nature brings;

Our meddling intellect

Mis-shapes the beauteous forms of things:–

We murder to dissect.

I was privileged to attend a recent AAHPM summit on quality. We talked about taking the lead in defining quality for our field. We were each asked to offer a personal vision for what the AAHPM Quality and Practice Standards Task Force could be in five years. I put mine in the form of a thank you letter from a future patient:

August 9, 2012

Dear AAHPM Quality Task Force,

When I learned a couple of months ago that I have advanced cancer, I was afraid. Not just of the usual things–having pain, being a burden, dying–even more afraid of how the doctors would treat me. I flashed back to the ordeal we went through when my husband died of cancer 6 years ago. As we moved from hospital to clinic to hospice at home, it seemed everyone treating us had their own agenda. We felt lost and out of control. We were told what to do, not asked. He was in pain for so long before anyone did anything about it. When he finally got pain medication, he got so constipated that the hospice nurse had to remove it manually. We felt like cogs in a machine–a horrible, grisly machine.

I cannot believe how different my experience has been. Every time I go to the clinic, someone asks how I feel and what goals I have and how they can help. They are patient with my questions. They are honest and straight with me and support the choices I make that are right for me. I feel I am driving this bus. And I am always asked about my bowels! I am amazed at the transformation. I hear you all had something to do with it and just want to say thanks.


Cara Little-Moore

It seems to me that we need to go way beyond the current focus on symptom management and discussing goals of care to develop evidence-based practices and quality measures that actually foster compassion. We must be the standard bearers for patient- and family-centered care. We must promulgate best practices in interdisciplinary collaboration and holistic care. We must advocate for no less than restoring the human touch to health care.

Joe Rotella, MD, MBA, FAAHPM
Senior Vice President, Chief Medical Officer
Hosparus Inc.

Lessons from Palliative Care informed the Creation of Whole Person Care at McGill

In 2011, our burgeoning palliative care team had the unique experience to spend a week learning from the palliative care teams of McGill University. During that week we learned about the Whole Person Care Program and subsequently invited the Director of Whole Person Care, Dr. Tom Hutchinson to Mayo Clinic to lead a workshop on Whole Person Care. It was my pleasure to interview Dr. Hutchinson about the Whole Person Care (WPC) program at McGill.

Cory: Please share with us, Dr. Hutchinson how the whole person care program at McGill got started.

Tom: This history is important because WPC grew out of an insight from Palliative Care that subjective quality of life (QOL) could improve at a time when people are objectively becoming more ill. That change to improved QOL during periods of worsening incurable illness is the process of healing.

Cory: Tell me more about the relationship of WPC to Palliative Care (PC).

Tom: What PC did in taking care of incurable people was that they rediscovered the process of healing. Dr. Mount and Dr. Kearney are largely responsible for this rediscovery.

In 1999, they set out to reincorporate the process of healing into the medical mandate. It had been lost track of. We need both the medical science and the healing relationship; whole person care. The approach has been through transforming our approach to training our medical students and faculty and our relationship with the people of Montreal.

We have two main approaches. First with medical students they have a mandatory WPC curriculum that aims at teaching them tactics to provide a space for healing. Our hope is that McGill is producing physicians better able to incorporate a healing approach into their medical practice. Courses in the existential aspects of medical care are taught and mindfulness and meditation are offered as vehicles to facilitate a healing presence.

We also train our faculty so that there is an environment that is receptive to a healing approach where students can grow and develop.

Students are partnered with their faculty mentor for a mentorship process called physician apprenticeship. There are six students for one faculty for the entirety of medical school. Burnout is a significant entity in medicine. We have started to teach mindfulness for self-care and presence with patients.

We have engaged the public as we recognize the yearning of the general public for WPC. They are essential allies in the promotion of WPC. To capture their interest we have developed two forums to explore healing. Firstly, we have developed a film series in which films illustrating the process of healing are viewed and a dialogue is held after the film. The films are well attended.

We also offer a seminar series with a similar purpose. These are invited lectures on topics like empathy, hope, or other topics related to WPC.

Cory: I understand you are going to expand your influence to host the first ever international congress on WPC starting in the fall of 2013.

Tom: That is right. This conference will be held every other year in Montreal. The focus of the conference is to address how we can change the medical mandate to incorporate WPC. This will be a full breadth academic conference to cover topics such as mindfulness, narrative medicine, and methodology to change systems to incorporate WPC in to the standard practice of medicine.

Cory: This last spring you edited the first textbook on WPC. Can you tell us about the book?

Tom: The book attempts to put together the contributors to WPC from McGill and around the globe. It attempts to develop through 18 chapters the concept of WPC from different aspects and approaches. It covers topics from genetics to medical teaching, and concludes on professionalism at McGill. The last chapter lifts the veil and peeks at the future of WPC as a renewed focus on the relationship between the doctor and the patient. That relationship has both an empathic component and includes medical expertise that the patient doesn’t have. Along with that is the mutual respectful relationship and mutual vulnerability to treat them as a whole human being.

I think this is going to happen because this is what doctors really want and why many went into medicine. And it is what patients really want. Medicine is more effective than ever before but somewhat less attractive due to the loss of the approach to healing. A rediscovery of what is important to doctor and patient and gives satisfaction to both parties within the relationship.

Cory: Since WPC grew from lessons learned from PC, how will WPC and PC relate to each other going forward?

Tom: PC remains the best model for WPC that we have. PC is important as an exemplar of WPC. There is a risk that PC may become a more fixing, curing discipline and forget the healing aspect. PC has to remain the model for healing. PC needs to represent WPC for the rest of medicine. PC is a new way of looking at medicine that can change the rest of medicine. It will have a strong relationship with WPC. PC is a beacon for a different type of care.

Cory: How does PC maintain their skill, role and time in the changing health care landscape?

Tom: Not a simple solution. The more we turn medicine into an enterprise that is financially driven and primarily an industrial model of efficiency and cost effectiveness this will be unhelpful for medical practice. What these approaches do is focus on products and forget the reasons for what we do. A model that focuses on efficiency has different effects that particularly may divert away from processes that lead to healing. There is a momentum to the industrial model.

After speaking with Dr. Hutchinson, I can’t help but wish my medical school had had a similar curriculum with attention to WPC. Fortunately, there are ongoing opportunities to learn from the wealth of experience at McGill. I hope to attend the 2013 first international conference on whole person care. I have already read the book and given a copy to each palliative care team at Mayo within the Midwest.

Cory Ingram, M.D.
Assistant Professor of Family Medicine and Palliative Medicine
Mayo Clinic, College of Medicine

Medical Director – Palliative Medicine
Chair of the Palliative Medicine Specialty Council
Mayo Clinic Health System