Archive for December, 2013

Hospice and Palliative Medicine Visionary Atul Gawande Shares His Insights on the Field

In celebration of 25 years serving the profession, the American Academy of Hospice and Palliative Medicine (AAHPM) asked its 5,000 members to nominate who they think are the leaders – or Visionaries – in the field. They then asked members to vote for the top 10 among the 111 nominated.

“This program recognizes key individuals who have been critical in building and shaping our field over the past 25 years,” noted Steve R. Smith, AAHPM executive director and CEO. “These individuals represent thousands of other healthcare professionals in this country that provide quality medical care and support for those living with serious illness — each and every day.”

The Visionaries – 14 women and 16 men – are physicians, nurses and hospice pioneers such as British physician, nurse and social worker Cicely Saunders, credited with starting the modern hospice movement, and Elisabeth Kübler Ross, author of numerous books including the groundbreaking “On Death and Dying.” Five elected officials were nominated and one of them, former President Ronald Reagan, was named a Visionary for signing into law the Medicare hospice benefit in 1982.

Many of the visionaries will be sharing their thoughts about the field and who inspired their work. We’ll be posting them over the next several months. Today’s post is from Atul Gawande, MD, Associate Professor, Brigham and Women’s Hospital in Boston, MA.

Who has most influenced your work and what impact has he or she had?
As a writer, and someone who tries to think hard about how to practically improve our systems of care, it’s been the voices of my patients and many many leaders in hospice and palliative care who have shown what better really can look like.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
It’s a bit embarrassing, really, and an exaggeration, given that I am an outsider and nonexpert in palliative medicine. But it is gratifying. I always hope I can connect and offer credible ideas, and it means a lot to know I have.

What is your vision for the future of hospice and Palliative Medicine?
It is the one I learned from your own members: that being a good clinician for those with incurable disease is to understand that sacrificing time now for the sake of possible time later can be profoundly harmful. At that point, our most important work is helping people achieve the best possible day they can today, and everyday that they may have remaining.

More information on the Visionaries project, including the list of 30 Visionaries is on the Academy’s website www.aahpm.org.

Hospice and Palliative Medicine Visionary Sister Mary Giovanni Shares Her Insights on the Field

In celebration of 25 years serving the profession, the American Academy of Hospice and Palliative Medicine (AAHPM) asked its 5,000 members to nominate who they think are the leaders – or Visionaries – in the field. They then asked members to vote for the top 10 among the 111 nominated.

“This program recognizes key individuals who have been critical in building and shaping our field over the past 25 years,” noted Steve R. Smith, AAHPM executive director and CEO. “These individuals represent thousands of other healthcare professionals in this country that provide quality medical care and support for those living with serious illness — each and every day.”

The Visionaries – 14 women and 16 men – are physicians, nurses and hospice pioneers such as British physician, nurse and social worker Cicely Saunders, credited with starting the modern hospice movement, and Elisabeth Kübler Ross, author of numerous books including the groundbreaking “On Death and Dying.” Five elected officials were nominated and one of them, former President Ronald Reagan, was named a Visionary for signing into law the Medicare hospice benefit in 1982.

Many of the visionaries will be sharing their thoughts about the field and who inspired their work. We’ll be posting them over the next several months. Today’s post is from Sister Mary Giovanni, RN, founder, president and CEO, Angela Hospice in Livonia, MI.

Who has most influenced your work and what impact has he or she had?
I see my work as following along a path that God set for me. It is a series of experiences that has led me to where I am today, humbling accepting the title “Visionary.”

Initially it was my parents who influenced me and led me to a life of service. They each had the gift of giving to others. Even my mother, while raising all 12 of us children, found time to help others. Whenever neighbors were in need – whether it was mother cooking something for them, or my father building something for them – it was just something quietly done. I feel that was where I got my gift of service.

When I began my vocation as a Felician Sister, I was working in the infirmary where we cared for ill and elderly Sisters. I couldn’t help but notice the vast difference in the way we cared for dying Sisters in the infirmary, compared to the way dying patients were cared for in a hospital setting. In the hospital, dying patients were isolated at the end of the wing, where they were treated quietly until they died. I wished that all people could have the compassionate, holistic care that we provided for the Sisters.

When I saw Dame Cicely Saunders speak in 1974, I saw the answer of how to care for the dying. I knew we needed this beautiful care for lay people here in the United States. So Dr. Saunders also had a tremendous impact on me.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
It is an honor, and also very humbling to be named a Visionary. But I feel that I really must share this honor with all of the wonderful people who have worked alongside me over these 30 years. The caring and compassion I see in my staff and our volunteers continue to inspire me to this day. And I also must credit my fellow Felician Sisters who have believed in this mission and given me the resources and opportunities needed to carry out this work.

The success of Angela Hospice has certainly been a story of cooperation, and shared passion for helping others, and I know that none of this could have happened without the help of these dedicated colleagues and friends.

What is your vision for the future of hospice and Palliative Medicine?
I think that as more families experience the benefits of these compassionate programs, we will see a better understanding of the hospice concept as a whole out in the community. This is something I’ve already noticed with young people who have seen hospice help a grandparent or other family member. They have an appreciation for the compassion and caring of this work, which I believe begins to overcome the fear.

It is understandable that people don’t want to think about death or losing a loved one. But we know that it is important that people do know about what hospice has to offer, so that when we can be of help, they won’t hesitate to make that decision.

We hear from families time and time again saying they wish they had called us sooner. We can provide so much help, relief, and comfort to our patients and their families. The sooner they call us, the sooner we are able to provide that assistance, so the patient and their families can benefit more from these services. In this way, my vision for the future is greater comfort for more patients and the people that love them.

More information on the Visionaries project, including the list of 30 Visionaries is on the Academy’s website www.aahpm.org.

Beyond Traditional Care Management

Tanya Stewart, MD FAAHPM

It’s late afternoon when you receive a call from a home health nurse about a patient you’ve known for 12 years. Mr. Jones is 70 years old with multiple chronic medical conditions contributing to four hospitalizations in six months. He was referred to home health two weeks ago as part of his hospital discharge plan for heart failure management. The home health nurse reports he hasn’t been eating well for the past two days, is unable to walk across the room without stopping to rest and is becoming more confused. His care needs are escalating, and his 76 year old wife is no longer able to manage his needs. He was referred to hospice many times in the past and each time refused. At the last hospitalization he agreed to DNR code status with limited interventions, and his primary goal is to remain as functional as possible. The home health nurse requests guidance on how to proceed.

In the traditional medical system, Mr. Jones would most likely be sent to the emergency room and again admitted to the hospital. I propose there’s a better, more innovative option that breaks this cycle:

It’s late afternoon when you receive a call from an Optum nurse practitioner (NP) to inform you that Mr. Jones has been referred to CarePlus by his health plan as part of his hospital discharge plan. The NP visits Mr. Jones in his home the day after hospital discharge and talks with him and his wife to gauge their understanding of what happened in the hospital and next steps. The NP also completes a medication reconciliation, examines Mr. Jones and reviews his goals of care. At the close of the initial visit, the Optum NP gives the patient and caregiver his/her cell phone number and specific instructions to call if they have any questions or if certain symptoms arise. After the visit, care is coordinated with the local home health team and the Optum NP’s note is faxed to your office. Four days later, the Mrs. Jones calls the NP – she is concerned about increasing incontinence. The NP arranges for a chem7, BNP and urinalysis which are drawn by the home health nurse that day. The Optum NP reassures the Joneses and schedules a home visit for the following day.

At the following day’s visit, the Optum NP notices the Mr. Jones has increased LE edema, elevated JVP, difficulty speaking in complete sentences and increased lethargy. The urinalysis returned within normal limits. The chemistry panel is unchanged from discharge but BNP is 682 pg/ml. Mrs. Jones confirms he is taking the medications as directed from the last visit.

When the NP asks about diet, Mrs. Jones says they eat a healthy diet consisting of mostly soup and vegetables. With her permission, the Optum NP looks in the fridge and cupboards and notices the patient only has high sodium canned soup and vegetables. No fresh produce is found in the house. After extensive dietary counseling and coordination with a local meals on wheels program, the NP orders a diuretic increase, home oxygen, follow-up labs and arranges daily home health nursing visits for one week. The Optum NP closes the visit with a review of Mr. Jones’ advanced care plan. The Optum NP calls your office to provide an update, and a note is faxed the next day.

Over the next few days, the home health nurse calls the Optum NP several times reporting Mr. Jones seems improved. A potassium supplement is added to address low levels on a lab draw, and the NP requests the home health nurse reinforce with both patient and caregiver the importance of staying on a low sodium diet.

The following week, the Optum NP receives a distressed call from Mrs. Jones. Her husband is struggling to breathe, is again confused and unable to walk from his bed to bathroom. The NP makes an urgent visit and during the history review, Mrs. Jones admits she had high sodium take-out food delivered to the home the night prior at her husband’s request. After a complete assessment, the Optum NP confirms a diagnosis of heart failure exacerbation caused by dietary indiscretion. She implements a home hospitalization and administers intramuscular Lasix on two consecutive days and draws chem7 and BNP. Throughout the course of the acute event, the Optum NP calls your office to collaborate on the patient’s care and provide real-time updates.

On day three, Mr. Jones’ weight is down, but he is too weak to ambulate or complete any ADLs. His wife is fatigued and had a fall the previous evening when trying to help him to the bedside commode. Although he was adamantly against getting care at a skilled nursing facility (SNF), he agrees this may be necessary so he can gain strength to return home. The Optum NP arranges a direct admission to the neighboring nursing home for skilled care after speaking to the house physician and SNF admission coordinator. The Optum NP sends all notes from the Optum electronic medical record with the patient, calls your office to clarify your desire to follow the patient at the SNF or have the house doctor follow, and communicates the care plan changes with the health plan and home health agency.

During the skilled stay, the Optum NP sees Mr. Jones regularly, along with the attending physician. During one of the visits, the Optum NP reviews the goals of care. Mr. Jones recognizes he is tired of being so sick and is not living the quality of life he imagined. He requests his Physician Order for Life Sustaining Treatment be changed to comfort measures and hospitalize only if symptoms cannot be controlled at home. The Optum NP offers hospice, but he and wife again decline.

After regaining strength and the ability to complete his ADLs, Mr. Jones returns home. Over the course of the next six months he is treated by the Optum NP for a urinary infection, community acquired pneumonia and cellulitis. He does not have any additional hospitalizations during this time. During the holidays the Jones’ daughter visits from out of state for the first time in two years. She raises concerns about her father’s decreased strength, weight loss, confusion and instability with transfers. The Optum NP holds a family meeting and a decision is made for Mr. Jones to enroll in a hospice program.

As you can see, CarePlus goes beyond traditional care management programs. Providers deliver hands-on care to members at home and, if necessary, treat them. By doing so, CarePlus helps individuals avoid unnecessary hospitalizations and emergency room visits, reducing costs and improving quality. Throughout the relationship, CarePlus coordinates and delivers compassionate, hands-on care to individuals while providing ongoing care coordination with their primary care provider.

Do you serve in a more traditional system and see how such a model could benefit your patients? Do you work in a program like CarePlus, but with a different approach that’s achieving similar results?

Dr. Stewart works for Complex Population Management in Oregon and as the medical director for Community Home Health and Hospice in Longview, WA.

This post previews the latest installment of AAHPM’s Hospice and Palliative Medicine Profiles in Innovation.

Hospice and Palliative Medicine Visionary Charles von Gunten Shares His Insights on the Field

In celebration of 25 years serving the profession, the American Academy of Hospice and Palliative Medicine (AAHPM) asked its 5,000 members to nominate who they think are the leaders – or Visionaries – in the field. They then asked members to vote for the top 10 among the 111 nominated.

“This program recognizes key individuals who have been critical in building and shaping our field over the past 25 years,” noted Steve R. Smith, AAHPM executive director and CEO. “These individuals represent thousands of other healthcare professionals in this country that provide quality medical care and support for those living with serious illness — each and every day.”

The Visionaries – 14 women and 16 men – are physicians, nurses and hospice pioneers such as British physician, nurse and social worker Cicely Saunders, credited with starting the modern hospice movement, and Elisabeth Kübler Ross, author of numerous books including the groundbreaking “On Death and Dying.” Five elected officials were nominated and one of them, former President Ronald Reagan, was named a Visionary for signing into law the Medicare hospice benefit in 1982.

Many of the visionaries will be sharing their thoughts about the field and who inspired their work. We’ll be posting them over the next several months. Today’s post is from Charles F. von Gunten, MD PhD FACP FAAHPM, Vice President, Medical Affairs, Hospice and Palliative Medicine, Kobacker House in Columbus, OH.

Who has most influenced your work and what impact has he or she had?
There were many, but those that come to mind immediately include:
• Ted Rematt, a friend and old Roman Catholic priest who served as a volunteer chapin at the Hospice of St. John — for first introducing me to hospice care.
• Hospice nurses and Jamie Von Roenn, hospice medical director, — for guiding me when I started my residency in internal medicine at Northwestern Memorial Hospital in Chicago.
• Kathy Foley, Russ Portenoy and Bill Breitbart at Memorial Sloan-Kettering, Declan Walsh at Cleveland Clinic, Nigel Sykes at St. Christopher’s Hospice in London, Geoffrey Hanks at St Thomas’ Hospital and Janet Hardy at Royal Marsden Hospital — for allowing me to observe your work while I was learning about palliative care:
• Martha Twaddle, Mike Preodor, Mike Marshke and Kathy Neely — for helping me staff the inpatient unit so I would not always be on service.

What does it mean to you to be named a “Visionary” in Hospice and Palliative Medicine?
I couldn’t be more pleased that my colleagues see me as a Visionary and leader in our new field of medicine. I have never thought of myself as a visionary—rather, I see myself as an engaged and empowered clinician working to make bad things better. That is part of our professional calling as physicians—to respond to the needs of our patients and leave the system better than the way we found it.

What is your vision for the future of hospice and Palliative Medicine?
We are a part of standard medical care. The scientific results are in; palliative medicine isn’t a choice any more than washing hands before performing a surgical operation is a choice. The challenge is to build the systems and overcome the barriers to ensuring that palliative care is available to those who need it.

More information on the Visionaries project, including the list of 30 Visionaries is on the Academy’s website www.aahpm.org.

Highlights of the December Issue of the Journal of Pain and Symptom Management (JPSM)

Listed below are a few articles from the most recent issue of the journal:

Training Intervention for Health Care Staff in the Provision of Existential Support to Patients With Cancer: A Randomized, Controlled Study
Ingela Henoch, Ella Danielson, Susann Strang, Maria Browall, and Christina Melin-Johansson

Hospice Caregivers’ Experiences With Pain Management: “I’m Not a Doctor, and I Don’t Know If I Helped Her Go Faster or Slower”
Debra Parker Oliver, Elaine Wittenberg-Lyles, Karla Washington, Robin L. Kruse, David L. Albright, Paula K. Baldwin, Amy Boxer, and George Demiris

Fentanyl for the Relief of Refractory Breathlessness: A Systematic Review
Steffen T. Simon, Peyla Köskeroglu, Jan Gaertner, and Raymond Voltz

To access the articles, you must subscribe to JPSM or be a member of the American Academy of Hospice and Palliative Medicine (AAHPM). For further information on the Academy, call 847.375.4712 or visit aahpm.org.

Submitted by: David J. Casarett, MD, MA, Senior Associate Editor, JPSM