[4 MIN READ]
In this article:
After losing her five-year-old daughter to a rare neuromuscular disease, Michelle Moon, D.O., saw a deep need for patients and families to have more opportunities to connect to palliative care.
Palliative Care Physician, Dr. Moon, is helping patients with serious illnesses improve their quality of life at the Swedish Palliative Care and Symptom Management clinic at Swedish Issaquah.
Hospice and palliative care address different situations and different needs, and patients can ask for palliative care as soon as they receive a diagnosis.
When you or someone you love are experiencing a serious illness, it can be hard to recognize the moment when you need care that addresses more than just your physical health.
That moment is different for every patient and every family. And the type of care needed varies with the illness as well as the desires of the patient. But when the time comes, palliative care experts can help patients and families experience the best possible quality of life while they are in treatment.
Navigating that moment for her own family was what brought Michelle Moon, D.O. [AO1] to the field of palliative care. Once a practicing neurologist, Dr. Moon is now leading the hospice and palliative care program at Swedish Issaquah.
A personal journey to palliative care
Dr. Moon’s journey to hospice and palliative care began when her daughter, Julianna, was diagnosed with a severe neuromuscular disease that was not responding to even the most aggressive, leading-edge treatments.
“During Julianna’s last hospitalization, her providers offered us a palliative care consult,” says Dr. Moon. “At the time, I didn’t really know what it was. Like a lot of people, I thought it would be a conversation about hospice. Luckily I said yes, and it changed everything.”
Julianna entered hospice and palliative care at age four. It was a turning point for her and her family as they shifted their focus from fighting her disease to filling Julianna’s life with comfort and joy. The family had 18 months together before she passed away, and palliative care’s focus on her quality of life made it a time of togetherness and love.
Overcoming barriers to difficult conversations about patient care
The 18 months that Julianna spent in hospice and palliative care changed her family’s lives forever and changed the way Dr. Moon practiced medicine.
“I am a neurologist and found myself wanting to spend more time with my patients to talk them through difficult things and help them make difficult decisions,” she says. “But because of time and scheduling restraints, it’s really tough in most medical practices to take the time to do this. It’s also really hard for patients to process a diagnosis in the moment while they are still in the doctor’s office. They need time.”
“And after our experience with Julianna, I knew I needed formal training to talk to patients, families and caregivers when a condition is progressing, or medicine isn’t working.”
Three years after Julianna’s death, Dr. Moon decided to make a career pivot and pursue a hospice and palliative medicine fellowship.
The difference between hospice and palliative care
Palliative care and hospice care are sometimes confused with one another, but they are not the same. Palliative care is specialized medical care for patients with serious illness. It can occur at any stage of illness, and its goal is to improve quality of life.
Hospice care may begin when patients are no longer receiving treatments for their illnesses. Sometimes disease-directed therapy that provides comfort to the patient is continued in hospice, such as diuretics and medications for arrhythmia for patients with heart failure.
It is focused on making patients comfortable and ensuring they experience the best quality of life possible for the last six months of their life.
Palliative care focuses on providing patients symptom relief and quality of life care, and patients can begin palliative care as soon as they have been diagnosed with a serious medical illness. They can continue receiving it for as long as they need and want it. Studies show that palliative care helps people:
- Experience shorter hospital stays
- Feel better
- Manage the pain and symptoms of their illness
In some situations, the extra support palliative care provides may help people live longer.
Palliative care can be whatever you need it to be
At Swedish, palliative care providers work with primary and specialty care providers to help patients with various illnesses, including cancer, end-stage kidney failure, heart conditions and neurological conditions.
Palliative care services at Swedish include:
Answering questions you may have about your illness and the treatments you receive.
Connecting patients to psychological and spiritual support.
Coordinating essential resources, including financial support and transportation.
Helping patients and families adjust to their illness and the effects of treatment.
Helping patients and families make difficult health care decisions.
Prescribing medication that relieves physical symptoms.
Setting goals for care.
How to know when it’s time for palliative care
Every patient’s journey is unique, and each patient responds differently to treatment, so there is no set time to begin outpatient palliative care. But some signs and situations indicate it is the right time to reach out for palliative care, including:
Concerns about quality of life or treatment progress.
Symptoms that are hard to control, like pain, nausea, shortness of breath
Psychological distress, such as agitation, anxiety, or emotional or spiritual anguish.
Uncertainty about health care decisions
Palliative care supports patients and caregivers
Because the work of caregiving is so vital to the well-being of many patients, palliative care supports not only the patient but also the patient’s family and caregivers as they work hard to ensure the patient is getting the care they both want and need.
“A lot of people don’t know what palliative care is or why they need it,” says Dr. Moon. “And sometimes we are so focused on treating the disease that everything else falls to the wayside. But we are so much more than just our bodies, and there are many ways to suffer. Palliative care tries to address all of it.”
Learn more and find a provider
If you have questions about hospice or palliative care, contact your Primary Care Provider. We can accommodate both in-person and virtual appointments.
Join our Patient and Family Advisory Council.
This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.