The StewARTworks Foundation - Pain Management & Palliative Care - Illuminating, in bright, vibrant colors and beautiful works of art, a painful subject.
“When you don’t know, talk to someone who does…”
… she’s Diane Leavitt, from The StewARTworks Foundation, and she knows pain management and palliative care, and she’s here to talk about it and educate us.
Illuminating, in bright, vibrant colors and beautiful works of art, a painful subject.
My name is Diane Leavitt and I am a co-founder, along with my daughters, Rhiana and Morgan, of the StewARTworks Foundation, a nonprofit whose mission is to provide support and education for family caregivers of palliative care patients being treated for pain.
Taken at the foundation’s first “fund and friendraiser”, September 2018.
Left to right: Rhiana, Diane and Morgan.
The StewARTworks Foundation was founded in memory of our husband and father, Stewart B. Leavitt, a medical artist, writer and researcher specializing in pain management. He sought to educate the public about chronic pain, its treatment options and the toll pain takes, not only on the patient, but on the families, who are often the primary caregivers.
This picture was taken at a family wedding in March 2011.
Left to right: Rhiana, Stewart, Diane and Morgan.
Stewart was diagnosed with Stage 4 non-small cell lung cancer in 2013. Surgery and a twelve-week course of chemotherapy, along with subsequent maintenance chemo treatments, stabilized his cancer, with some minor side effects: nausea and fatigue.
However, pain – both neuropathic and muscular – became a constant in his life. And that is what led us to palliative care in 2014.
Stewart in his studio in 2015. If it looks staged, it was.
He self-published a book of his paintings
(Selected Water-Media Artwork, 2014-2015)
and wanted a photo of the artist for the back cover.
You aren’t alone if you are not familiar with palliative care. According to the "Center to Advance Palliative Care," only 3% of respondents to a poll said they were “knowledgeable” about palliative care.
So, what is palliative care?
When most people hear that term, they think hospice, end-of-life care. While all hospice is palliative care, not all palliative care is hospice.
The goal of palliative care (also known as clinical supportive care) is “to prevent and revue suffering and to support the best possible quality of life for patients and their families, regardless of the stage of disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care.” IAHPC Global Project (in conjunction with WHO, the World Health Organization) - National Consensus Project Definition of Palliative Care
Today, it is estimated that over 9 million of the approximately 14 million people in this country with a history of cancer are surviving more than five years after diagnosis, but still suffer from chronic pain and other conditions related to curative treatments and the disease itself. Palliative care predominately provides pain management for patients but also guides patients and their caregivers/families from diagnosis, through treatment, recovery, survivorship and bereavement.
An ideal palliative care team includes: a physician specializing in pain management, nurse, social worker, nutrition/dietician, pharmacist, and clergy; all certified in palliative care. The team can also refer patients to outside resources as needed, for physical therapy and complementary therapies, such as clinical massage and acupuncture.
While under-treated cancer pain is the number one reason patients seek help from palliative care providers, there are more side-effects and symptoms (eating problems due to severe or chronic illness, shortness of breath, fatigue, nausea) of other diseases and chronic illnesses (Congestive heart failure, COPD, kidney failure, dementia, Parkinson’s disease, ALS, HIV/AIDS, MS, Sickle cell anemia) which can be relieved through palliative care.
Who benefits from palliative care?
Patients, caregivers and their families.
Palliative care is patient and family-centered care supporting the needs of both; promoting communication and shared decision making between patient, caregiver/family and physician. “Having a seat at the table” allows the palliative care team to also coordinate and collaborate with all healthcare providers and teams in support of the patient. These providers and teams recognize and appreciate that the patient and caregiver/family are receiving an extra layer of care from the palliative care providers, so they, too, benefit from palliative care.
When should you seek out palliative care?
Ideally, upon diagnosis of a life-threatening disease or chronic illness. Having a palliative care physician on the interdisciplinary care team, as the treatment plan is being developed, can provide support for patients and caregivers/families by helping them to clarify their goals for treatment, pain management and quality of life.
We sought out palliative care, in late 2014, when Stewart’s pain began to severely impact his quality of life. We had experience with a local non-profit palliative care organization through the hospice services they had provided, over several years, to both of Stewart’s parents. Stewart and his oncologist agreed that the pain management knowledge of the palliative care physician would be much more beneficial to Stewart and allow the oncologist to focus on what he did best: making certain that the treatments kept the cancer stable. Studies have shown that the earlier a partnership between palliative care and oncology is established the better a patient’s pain is managed and reduced.
Stewart’s palliative care physician was equipped with a massive “toolbox” of medications and therapies that could be used to reduce and control the pain. But before he started trying to solve the puzzle of Stewart’s pain, he and Stewart talked about the goal of the treatment: What did Stewart want to be able to accomplish during his day? What activities were most important to him? Were medications enough or did he want to try interventional procedures that might provide extended relief? The pros and cons of options were discussed and always with Stewart’s goals in mind.
When one medication did not affect the pain levels in a reasonable amount of time, Dr. Al (who made house calls on a purple Harley) crossed that medication off the list and moved on to the next, until he finally found a combination of medications that kept Stewart comfortable, functioning and alert, along with a single, stronger medication that was used for breakthrough pain. Stewart was no longer able to do the research and writing which had been his livelihood but that was no longer his top priority. Painting - art, was something he had not done for many years and he was eager to set up his studio and begin exploring his talent again.
In the last 15 months of Stewart’s life, he produced over 150 paintings and had sketches and ideas for many more. His art was bright, bold and life affirming. He freely used color, explored new forms, mediums and techniques. It was not unusual for him to have 2 or 3 canvases on his worktable at a time all in various stages of completion. The walls in our home became mini-galleries and friends and family excitedly anticipated who among them would be beneficiaries of his prolific work. (View his online gallery at: http://bit.ly/StewART)
Stewart B. Leavitt filled his life with family, art and work: researching and writing about pain, in all its forms, with a commitment to educate and help those suffering with pain and their families. Following are several of his works.
"Fall Evermore #2", reflects the bold colors that
Stewart embraced when he began painting again.
"Gouche Study #17", is actually a representation of the dock at my parents former home on Lake Carlos in Alexandria. We spent a few weeks every summer on the lake for many years. Stewart loved fishing – mostly catch and release – but he did enjoy a good batch of sunnies and walleye, especially the way my mom fried them.
"Storm Coming", displays Stewart’s later interest in using bands of color to create
land and waterscapes.
Stewart had prioritized being able to paint and spend time with family and friends talking about his artwork. That for him was “quality” quality of life and palliative care helped him achieve it for a time. Stewart passed away in February 2016. He was 70 years old.
How do you find a palliative care provider?
Stewart and I already had experience with a non-profit palliative care organization, so we did not have to ask for help in finding a provider. There is still, unfortunately, a stigma attached to palliative care because patients and caregivers/families associate it with hospice care, end-of-life – a loss of hope. Many medical and healthcare professionals are themselves not only unprepared and uncomfortable initiating a discussion about palliative care with patients, for that reason, but they may also have limited knowledge about finding a palliative care physician or provider.
Palliative care services can be found in hospitals and clinics, through non-profit and for-profit organizations, and physician private practices. They each provide different services, which vary from state to state.
In the Twin Cities, you have the Minnesota Network of Hospice and Palliative Care (www.mnhpc.org) which has a provider locator for palliative care providers. Nationally, Get PalliativeCare.org (www.getpalliativecare.org) has a state-by-state provider directory.
Palliative care has a presence in a number of large hospitals in this country, usually under the pain management specialty. This “supportive care” team works in conjunction with an oncologist or other specialists when a patient is admitted to the hospital. When the patient is ready to transition from the hospital to home care, skilled nursing or long-term care facilities the hospital palliative care team has no further contact with the patient and caregiver/family.
Cancer centers, affiliated with large hospitals or healthcare systems, may have a palliative care clinic available to patients undergoing treatment for cancer. These clinics do not usually offer in-home care.
In the past these practices have not provided palliative care to their patients. Some practices have started adding palliative care support services as part of a holistic approach to treatment: pain management physicians, nurses, nutritionists/dieticians, pharmacists, clergy, physical therapy and some complementary therapies, such as acupuncture and clinical massage. A one-stop shop for cancer treatment. Oncology practices also may partner with a private palliative care practice and refer patients to them when needed.
To help fill the gap in care, these are organizations that provide palliative care services outside of the hospital or clinic setting. They provide services to patients in assisted living or long-term care facilities as well as at-home care. These non-profits primarily provide hospice and end-of-life care but are beginning to expand their palliative care programs and services.
Specializing in home care, these companies provide palliative care services to patients but not hospice care. Some companies are “multimodality” providers. Instead of having separate healthcare providers for blood draws, wound care, physical therapy, etc. coming to the home, these companies provide a sole home-care provider – a nurse practitioner – that can provide almost all the necessary patient services, including in the future, infusing medications and cancer chemotherapy.
It is important that you, as a caregiver, have a discussion, first, with your loved one about palliative care. Educate yourselves about palliative care providers in your area and the services they offer. After doing a little research, bring the conversation to your loved one’s primary doctor, oncologist or specialist. How might palliative care benefit your family, what symptoms or side-effects might be alleviated or better controlled and what other services might provide emotional support for you, your loved one and your family?
Check with your insurance provider to see what benefits are available to you regarding palliative care. Medicare, Medicaid and private insurance companies do not use the term palliative care. Their “home care” or “long-term care” usually pays for doctor visits, outpatient care, mental health care and most medications.
A referral from a doctor is not necessary to see a palliative care physician, unless they are in the same practice or healthcare provider system, but it is important to keep all members of your healthcare team in the loop.
Communication, you with your loved one and your care team with both of you, is critically important to achieving the goal of improving quality of life for everyone in your family as you face the challenges ahead.
Palliative care focuses on the family’s well-being rather than fixating on the treatment of disease. It provides the entire family guidance and stability as they move through the illness and care trajectory.
In his book, The Best Care Possible, Dr. Ira Byock states, “Knowing what to expect, what to demand, and what limitations to accept can lessen the burdens of illness and caregiving.”
"In all of my works, I strive to be a painter of brightness and hope; rather than portraying any of the gloom that sometimes colors my life."
- SB Leavitt
Pain Management and Palliative Care is the heart and soul of The StewARTworks Foundation and close to Diane’s heart. It is an important subject when it comes to cancer caregiving.
I encourage you to visit The StewARTworks site to learn more about the Foundation and view Stewart’s art gallery.
Diane’s goal is to educate and inform – she would love to hear your thoughts and any questions that you have on this subject.
Please write any comments or questions to Diane in the comments section below and she will answer anything that she can about this subject.
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