Palliative care has been around since the 1970s, but it’s still very misunderstood, even among those in the health care field. At Michigan Medicine, there has been a formal palliative care team since 2005.
The team defines it as holistic patient-centered care that encompasses not only symptom management related to serious and advanced illness, but also offers additional layers of physical and emotional support for patients and families who may feel overwhelmed by stress, caregiving and navigating a complex health system, while making complicated medical decisions.
A group of dedicated palliative team members recently dispelled some common myths around the profession.
Myth #1: If you ask for palliative care your patient might see a ‘pain nurse’
Michigan Medicine has full palliative care teams which include physicians, nurse practitioners, social workers, spiritual care professionals, clinical pharmacists and other specialized providers.
“We’re not just a team of physicians or nurses. We’re a multidisciplinary team of specialists, of equally important roles, and we work in both inpatient and outpatient areas,” said Jane Chargot, M.D., assistant professor of family medicine, who first became interested in palliative care as a bedside nurse in the intensive care unit.
“I realized how much I enjoyed caring for and building relationships with patients with complex illnesses, and when I transitioned to primary care, palliative care was a way to support patients who have been diagnosed with life limiting diseases. I feel with our support there is hope for every single patient to have quality of life whatever their diagnosis.”
Myth #2: Palliative care is another name for hospice
The team’s biggest challenge is that patients and health care providers often confuse palliative care with hospice and due to a misunderstanding of what the team can do to support treatment, patients may not be referred to the team soon enough.
“Palliative care should be involved early with any diagnosis of a serious, life limiting illness to help the patient develop treatment goals and to educate them about their illness,” said Paula Slack, N.P., O.P. Palliative Care, East Ann Arbor.
“Our involvement isn’t always about preparing for end of life. It can also be curative. For example, we recently had a patient that will graduate from palliative care as she is in surveillance mode and her symptoms have resolved.”
Myth #3: Palliative care is just for cancer patients
Some illnesses that may benefit from palliative care in addition to cancer are end-stage or advanced congestive heart failure, cirrhosis, kidney failure, chronic lung disease, dementia, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis and recurrent stroke.
“Every case is different and every visit is unique,” said internal medicine physician Rachel Denny, M.D.
“But what is common among our patients is that all their conditions are very complex and they see many doctors and that is where we can benefit them the most. We sit down with them and help them unpack all the information they are receiving.
“Some may be struggling with their mood, but others may need you to help them problem solve before an upcoming procedure. Every situation is different but it is all about helping them to achieve a better quality of life.”
For Denny, the most important aspect of their service is to listen closely to the needs of the patients and their families. The palliative team can provide support which gives the patient and their loved ones the opportunity to raise concerns they may be uncomfortable with sharing otherwise.
Denny shared this example.
“Two kids of a dementia patient wanted to make their parent more comfortable at home. They wanted to honor their medical wishes to stop taking some medications and they couldn’t communicate to their doctor any longer, but they were afraid to take responsibility for the decision. We had a great conversation and I empowered the kids by telling them they could halt the medications without any harm to the parent and make them comfortable.”
Myth #4: Palliative care means the physician has given up on the patient
“That is usually the first discussion we have with our patients,” said nurse practitioner Katie Patterson of the Rogel Cancer Center Palliative Care Symptom Management Clinic. “People think you have to be dying or they think their oncologist is giving up on them to be referred to us.”
“In reality,” she added, “the bulk of the patients I see have pain management issues, with only some of those cases at the point of end-of-life decisions. I also have several patients who are disease free but are coping with chronic pain and are still coming to see me.”
Patterson says a lot of education is still needed not only among patients, but with physicians and other caregivers within our own health system.
“There was a study conducted that showed if you call it palliative care, patients were less like to go to an appointment and doctors were less likely to refer. That is why our clinic is called symptom management.”
Myth #5: There is not much you can do for a palliative care patient except make them comfortable
Palliative care expands the traditional model of health care, which focuses on treating disease, to include enhancing quality of life, improving function, supporting caregiving and helping with decision-making.
“Most challenging has been changing the culture of cure only,” said team social worker Amanda Eidemiller, LMSW, IP and OP, of the Palliative Care Briarwood Clinic.
“The cancer, heart disease, liver failure, infection or whatever might cause death and we can’t stop that, but we can help. We can reframe what is being hoped for, and we have ways to help that are not about cure.”
Eidemiller explains that palliative care improves the patient experience in many little ways by focusing on quality of life or supporting the family’s caregiving efforts.
“Like any specialty in medicine, we have a vast array of experience and skills and want to partner with providers to provide the best care for patients,” she added. “We’re not all about just stopping things, we want people to get better, to live full and long lives whenever possible.”
Eidemiller also explains the importance of honoring a patient’s end of life decisions and shared this moment she recently had with a patient.
“I remember sitting with a patient who nearing death, asked if I would stay with them as their family was more than an hour away. We talked about motorcycles and music, their childhood dog and their regret of not getting to the ocean one more time. I told them they could, in their mind’s eye return to that beach, watch the waves, feel the sand under their feet.
“I found an app that played beach sounds and together we created a meditation for them. It was quite profound to watch their face relax as they ‘stepped onto the beach.’ They died the same night. Their family later told me that they thought I had given them the best gift, to truly just be on the beach and let go of their worries for a while.”
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Previously Published on michiganmedicine.org with Creative Commons License
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