Lovell Foundation, Community Foundation for Southern Arizona partner to award nearly $3 million for end-of-life care and planning services

Conversation

The year leading up to death for those with chronic conditions can be emotionally difficult and stressful for patients and families. It’s also costly, with patients in that final year accounting for 25 percent of total Medicare spending on beneficiaries over the age of 65.

There has to be a better way.

The David and Lura Lovell Foundation and the Community Foundation for Southern Arizona in late July announced their alliance to award almost $3 million to Arizona nonprofits to cooperatively address issues related to the awareness, understanding, and availability of end-of-life care, particularly for underserved and vulnerable communities.

Tucson Medical Center Foundation is pleased to be part of that coalition, which represents one of the largest end-of-life care initiatives across the country.

It also builds on four years of focused effort at TMC on improving care for those with life-limiting illness.

“Breaking down taboos about mortality is the first step in empowering patients and their families to have conversations that provide an opportunity to share their values, priorities and beliefs about death,” said Michael Duran, TMC’s chief development officer. “Having a clear road map about what you want from health care providers to how you want to be memorialized is a gift to yourself and to your family because it reduces the guessing and power struggles that can arise in the absence of that certainty.”

TMC has engaged case management, Hospice and Senior Services teams, and two accountable care organizations, Arizona Connected Care and Abacus Health, in the effort to improve advance care planning for adults and their caregivers throughout the community. The grant will provide resources to primary care practices and hospital case management to assist patients in making more informed decisions.

Karen Popp, the director of care coordination for Arizona Connected Care, said the coalition may ultimately serve as a national model for those assisting patients with their choices at the end of life. “What is particularly profound about this collaboration is that we have an opportunity across an entire region to create positive change around the ability of patients to honor the quality of life they expect as they face the end of their lives.”

The Lovell Foundation awarded a total of $2,507,619 for end-of-life care and planning projects. CFSA grants total $390,000. Grants range from $20,000 to $1 million to support end-of-life care programs that engage the community, educate professionals and patients, institute organizational and community standards of practice, develop the healthcare workforce and impact public policy.

“Our collective goal is to fundamentally change the narrative on how we plan for, care for and experience death and dying in Southern Arizona and beyond,” said John Amoroso, executive director of the Lovell Foundation. “Ultimately we all – individuals, families, caregivers, health systems and communities – bear the responsibility for changing the status quo by helping each other to engage in compassionate, honest conversations about our mortality, the type of healthcare we wish to receive and how it is given across the spectrum of life choices.”

This year’s grants were awarded to the following organizations:

The Lovell Foundation shared this interest in end-of-life care and previously funded “Passing On,” an award-winning documentary produced by Arizona Public Media and broadcast nationally by PBS, and other projects.

“We did a community-wide scan on end-of-life issues. We discovered this group of dedicated organizations and individuals that had been working together with support from CFSA funding. That kind of energy and potential emboldened the Lovell Foundation to expand our commitment to end-of-life care and make an even bigger investment,” said Ann Lovell, president of the family foundation and daughter of its founders.

 

TMC will be featured in documentary about palliative care and end-of-life

maxresdefaultArizona Public Media, AZPM, is airing an original documentary that sheds light on a subject most people shy away from: end-of-life. Passing On encourages a thoughtful dialogue about end-of-life issues and the need to have critical conversations about one’s wishes for their final days.

Passing On premieres on Monday, Feb. 22, at 9 p.m. on PBS 6.

Death is as much a part of human existence as is life, yet it remains a mysterious and often taboo subject. Passing On explores death and dying through a series of compelling, personal and thought provoking stories that will engage viewers and provide valuable information about planning for end-of-life.

“As a filmmaker, it is a tremendous honor and huge responsibility telling someone else’s story,” said Tom Kleespie, AZPM Senior Producer, Special Projects. “Each story that we tell in Passing On contains a valuable lesson, a moral that I hope the audience will take away with them. The families featured in this documentary allowed us in during one of the most difficult times in their lives. I hope viewers will realize the importance of dealing with these issues if they ever find themselves in a similar situation.”

The film will share perspectives from physicians who work with the dying and families who were willing to share their stories about their end-of-life journey.

The crew also traveled to La Crosse, Wisconsin, to learn more about a town where more than 90 percent of residents have completed advanced directives. The nationwide average is just 30 percent. Why are this town’s residents so much more prepared for end-of-life issues than the vast majority of Americans? Kleespie interviewed several experts and locals to find out.

You’ll also hear from Dr. VJ Periyakoil of the Stanford University School of Medicine about how medical professionals must sensitively communicate important information to people across a wide array of cultures and native customs.

You can see the trailer here​.

More information can be found by clicking here.

Nov. 13 end-of-life conference features Dr. Andrew Weil

2015 Conference Art FPODr. Andrew Weil discusses integrative approaches to end-of-life care Friday, Nov. 13, at the Tucson Convention Center as part of the annual End-of-Life Community Conference hosted by TMC Hospice, Casa de la Luz Foundation and Carondelet Hospice & Palliative Care.

During this day of insight, speakers and attendees will expWeilore new facets of care and compassion at the end of life. Keynote speaker Weil is a world-renowned leader and pioneer in the field of integrative medicine, a healing-oriented approach to health care, which encompasses body, mind and spirit. As founder and director of the Arizona Center for Integrative Medicine at the University of Arizona College of Medicine, he also holds the Lovell-Jones Endowed Chair in Integrative Rheumatology and is Clinical Professor of Medicine and Professor of Public Health.

Other topics include:

• Healthy Living Through the End of Our Lives with James Nicolai, M.D., Casa de la Luz Hospice

• End-of-Life Through the Eyes of an ER Doctor: A Personal Journey and Perspective with Alan Molk, M.D.

• Through the Rabbit Hole: Seeing Death Through the Lens of Alice, Mystics and Indigenous Teachers with Pamela Hale, M.A.

Closing Plenary: Compassion, the Caregiver and the Clinician with Mary Frances O’Connor, Ph.D., UA Assistant Professor, Department of Psychology & Psychiatry

Registration begins at 8:30 and the $75 registration includes breakfast and lunch. Continuing education credits are available. To register and for more information click on registration link below:
Eventbrite - End-of-Life Community Conference

This conference is hosted by TMC Hospice, Casa de la Luz Foundation and Carondelet Hospice & Palliative Care

   

 

Special thanks to our conference sponsors:

  • The Connie Hillman Family Foundation
  • Arlene Gerety

     

          

Special thanks to our lunch sponsor:

Canyon Bank

Cultivating compassion for those who work with the dying a topic of keynote speaker for Nov. 14 hospice conference

Hospice Conference logoUnderstanding how clinicians respond to the distress and suffering of others is critical to those who work in palliative care, says the keynote speaker of an upcoming conference hosted by three local nonprofit organizations focused on hospice care.

“Over the past 45 years, I’ve worked with various types of clinicians in the end-of-life care field,” said Joan Halifax, PhD, a pioneer in the field of end-of-life care, “and so many have experienced a certain amount of distress.”

Halifax will explore the power of compassionate care of the dying during the End-of-Life Community Conference ‑ Compassionate Conversations: Dying and Living Well, on Friday, Nov. 14, from 8:30 a.m. to 4 p.m. at St. Philip’s in the Hills Episcopal Church, 4440 N. Campbell Ave.  The event is sponsored by TMC Hospice, Carondelet Hospice & Palliative Care and Casa de la Luz Foundation.

HalifaxHalifax received her doctorate in medical anthropology in 1973 and has lectured on the subject of death and dying at academic institutions and medical centers around the world. She received a National Science Foundation fellowship in visual anthropology, was an honorary research fellow in medical ethnobotany at Harvard University and was a distinguished visiting scholar at the Library of Congress.

Her work adds to an expanding body of research that is evolving within neuroscience and social psychology focusing on empathy and compassion in response to suffering.

“It takes patience, courage, insight, discernment and real concern to care for the dying,” said Halifax, who is also founder, abbot and head teacher of Upaya Institute and Zen Center in Santa Fe, N.M.

One thing she plans to discuss is misperceptions about empathy and compassion.

Empathy is, in part, “about attuning to the emotions of others and taking others’ perspectives,” she said. But empathy does not necessarily involve concern for others or the intention to relieve the suffering of others.

“Empathy can be fraught with pitfalls. People can experience empathetic distress.”

An important part of compassion is regulating one’s empathy, said Halifax, who trains health care workers to be “more grounded, more intentional and balanced; to work with one’s own emotional response.”

“There are many approaches to cultivating compassion,” Halifax said, and one of her goals for conference participants is “to create enthusiasm for compassion.”

To register or for more information about the conference, visit www.TucsonHospiceConference.eventbrite.com

 

How end-of-life dialogue can be helpful, not heartbreaking

Jackie Isaac in May 2012, less than a year before she passed away.

Jackie Isaac in May 2012, less than a year before she passed away.

“I wonder how it will happen…”

That’s what Jackie Isaac said to her daughter Dory Martin as the two were having breakfast about a month before Jackie passed away.  “’How will I die’ is what she meant,” said Dory.

For many of us, just the thought of a loved one dying is enough to force us to think of something else – ANYTHING else – instantly.  Having a conversation with a loved one about their wishes surrounding death?  Forget it.  But that conversation doesn’t have to be so uncomfortable that’s it too much to bear.  In fact, having that talk, and knowing what your loved one wants, will make aspects of that incredibly painful time a little bit easier.  People who have experienced death firsthand shared their perspective at a critical health care decisions workshop hosted by Tucson Medical Center called Your Life, Your Plan, Your Choice. 

About 70 people attended the Your Life, Your Plan, Your Choice workshop.

About 70 people attended the Your Life, Your Plan, Your Choice workshop.

Dory spoke about her mother’s life – a life well-lived – and about having that conversation prior to her mom’s death from a neurologically based illness at the age of 85.  Before the illness consumed her, Jackie made her health care wishes known, and also wrote out an ethical will – a personal letter in which she expressed her values, experience, wisdom and end-of-life wishes.  Having the conversation about end-of-life wishes and the documents that spelled things out gave her children clear cut instructions…and left few decisions up for debate.

Understanding those wishes is a big part of palliative care.  The term “palliative care” is often confused with hospice care.  Palliative care is family-centered care that optimizes quality of life by anticipating, preventing and treating suffering.  Throughout the continuum of illness, it involves addressing physical, intellectual, emotional, social and spiritual needs and helps facilitate patient autonomy, access to information, and choice.  At the base of palliative care: What are the patient’s desires and wishes?

“Quite often we get so hung up on what we can do for someone medically that we don’t ask who the people are and what they would really want. And that, I feel, is the more important question,” said Kathy Kennel, NP, a Palliative Care coordinator at Tucson Medical Center.  Kathy also spoke at the workshop, opening her talk with a flashback to her mother’s dying days, and how she vowed to do whatever she could to help families at the end of life.

Dr. Larry Lincoln, TMC Hospice Medical Director, also shared a personal story about his mother, who lived in a care home with dementia and heart failure toward the end of her life.  “She told me she did not want to go on living for a year prior to her death,” he said.  Dr. Lincoln vividly remembers receiving a call from the care home.  His mother had a medical crisis in which she could have been treated and potentially moved back to the care home.  He thought about his mother’s words and made the decision not to have her treated.  She was transferred to Peppi’s House where she was kept comfortable until her death.  Even though he knew that he was following his mother’s wishes, he still struggled with being responsible for her death.  He explained that many people have this initial reaction when faced with these important decisions.  He knows that he did not kill his mother; he was simply carrying out her wishes.  He took comfort in what she expressed to him before the dementia got severe. 

Having a meaningful, open dialogue about end-of-life wishes is not easy, but this website gives you a good place to start: www.theconversationproject.org.  Advance directives are another way to provide some direction.  Formal advance projectdirectives are documents written in advance of serious illness that state your choices for health care, or name someone to make those choices, if you become unable to make decisions.  Through advance directives, such as living wills and durable powers of attorney for health care, you can make legally valid decisions about your future medical treatment.

Healthy Living Connections, a TMC Senior Resource Center, is organizing many events this fall, including a conference on Positive Aging for Women, Medicare Updates, and Caring and Coping with Tremors.  For more information, to register, or see what other classes are available, please click here.

Palliative Care: Options not absolutes

Generally speaking, we live in a society that is uncomfortable talking about suffering and death. The reality though, is that both are a part of life. It is important that medical and clinical staff, along with chronically ill patients and their families understand that it must be acknowledged on the way to an open dialogue about palliative care options.

The term “palliative care” is often misunderstood, and often confused with hospice care. However, palliative care services offer a wide array of options that do not center on death. While death might ultimately be a part of the conversation, the broader scope of palliative care is for anyone with a serious, complex or chronic illness.

The goal of palliative care is to prevent and relieve suffering. Its purpose is to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Additionally, it helps guide and assist the patient and family in making decisions that will help them achieve their goals—improving their quality of life and often extending it as well.

In a well-known study published in 1996, known as the SUPPORT study, it was reported that Americans often died in pain, and their wishes for how they’d like to live out the remainder of their lives were either unknown or ignored. It raised an important question that is the basis for palliative care: What are a patient’s desires and wishes?

“Quite often we get so hung up on what we can do for someone medically that we don’t ask who the people are and what they would really want. And that, I feel, is the more important question,” says Kathy Kennel, NP, a Palliative Care coordinator at Tucson Medical Center.

Kennel receives many letters from patients and their families who have benefitted from Palliative Care. One such letter reads, “As a daughter, we didn’t know which direction to go, and you helped clarify what would be important for our mom. Thank you for asking about who our mom is.”

The benefits of this approach extend well beyond the individual patient. In an excerpt from his recent article entitled Palliative Care: Improving Care for Chronic Illness, Dr. Scott Lake states:

“When asked, most Americans say they would prefer to die at home, yet the majority of us die in hospitals and other institutions, often in pain. It would seem logical that the more health care a patient gets, the better that patient’s care would be, but for those nearing the end of life, this is not always the case. In 2009, Medicare spent an estimated $143 billion caring for people in their last year (25% of all Medicare spending). It is estimated that 20-30% of this care had no meaningful impact on the outcome of the illness; to the contrary, such spending and extensive treatment can too easily decrease quality of life during this period, and thus, the quality of death.”

 

Although the practice of palliative care has really picked up momentum in the last 5-10 years, there are still a lot of myths and confusion surrounding it. At Tucson Medical Center, actively offering Palliative Care options and discussions to our patients and their families from the onset of symptoms from a serious, life-limiting disease, is in alignment with TMC’s mission, vision and values. As such, it is important that the community is able to truly understand what it is.

 

Seriously ill patients should know there is a medical specialty focused on meeting their unique needs. TMC’s palliative care nurse practitioner can work with a primary care physician to provide treatment of the pain, discomfort, and stress while the patient is receiving other treatments at all stages of an illness.

For anyone who wishes to learn more about palliative care programs and options, TMC will be hosting a panel discussion on Nov. 14 at the El Dorado Health Campus from 10 to 11:30 a.m.  Join Larry Lincoln, MD, Kathy Kennel, NP, and Mary Steele, RN, to learn what Palliative Care is all about, when to access this service, and the future of Palliative Care.

To sign up, contact Joanne at Health Living Connections at (520) 324-1960.


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