Kidney Palliative Care
Improving quality of life
Palliative care is specialized care for people with serious illnesses that focuses on minimizing pain, symptoms and stress. The goal is to improve quality of life, and that is done by treating the whole person and not just the illness, by addressing the emotional, spiritual and psychological sides of disease.
“What matters most to patients is how to live well with the optimum quality of life,” says Dr. Dan Lam, “and that varies from patient to patient.”
Our interdisciplinary Kidney Palliative Care team from left:
social worker Jennifer Christophel Lichti, nephrologist Dr. Dan Lam and nurse Megan Nolan.
Often transformative for patients and their families, palliative care means meeting patients where they are -– physically, emotionally and geographically -– to help them find a balance among independence, comfort and longevity. Northwest Kidney Centers introduced the world’s first palliative care program for dialysis patients in 2017.
An interdisciplinary approach
The team members share responsibilities as they bring complementary professional expertise to bear. Comprising a physician board-certified in palliative care and nephrology, a nurse and a social worker, the team’s work is done in partnership with the dialysis care team. The team meets weekly and creates tailored plans to help each of their patients cope with anything from pain and depression to insomnia and mobility issues. In addition to their specialties, team members are skilled in discussions about difficult health care decision-making, conversations about goals of care, and advance care planning for the end of life.
Palliative care vs. Hospice care
Appropriate at any age and any stage in a serious illness, palliative care focuses on relief from the symptoms, pain and stress — whatever the diagnosis. Palliative care can be provided along with curative treatment and may begin at the time of diagnosis. In palliative care, you do not have to give up treatment that might cure a serious illness.
At some point, it may not be possible to cure a serious illness, or a patient may choose not to undergo certain treatments. In such situations, hospice is appropriate. Palliative care then transitions to hospice care.
Hospice can be provided in any setting—home, nursing home, assisted living facility or inpatient hospital. It provides comprehensive comfort care as well as support for the family, but, in hospice, efforts to cure the person’s illness are stopped.
The Shaw family’s experience
[Pictured: Ian Shaw with a photo of his late father Louis Shaw.]
The palliative care team met Louis Shaw and his family in 2018 soon after Louis was diagnosed with cancer.
Louis had a large family, 16 kids spread across the county, and loved to tell staff and other patients stories about those kids. The team reached out as many of the children as they could to tell them about the seriousness of Louis’ condition and to organize an in-person meeting at his residence.
At the family meeting, youngest son and Burien resident Ian was elected to be Louis’ Durable Power of Attorney. The team began guiding Ian in his new role, while separately meeting weekly with Louis about his goals and needs.
Louis, who had been told he was too weak to survive chemotherapy, chose to get healthier and stronger. In 2019 was deemed strong enough to start chemotherapy.
As he got stronger, he met less often with the Palliative Care team, and began participating more in the activities he enjoyed and spending time with his family. Having always loved to sing, he joined the choir at his nursing home. Bingo became another pastime. One of Louis’ favorite days was when a group of his kids came and took him out fishing, a favorite pastime that he hadn’t been able to do in years.
COVID-19 restrictions cut Louis off from a lot of personal contact. Though his family spoke with him regularly by phone, in person visits were not allowed. When Ian saw Louis again in person, he did not think that Louis looked healthy, and he feared the worst: the chemotherapy was not working.
“Nobody wants to have that conversation. They [the team] really helped me,” said Ian, about the counsel he received at that time.
The team began meeting with Louis regularly, giving him reprieve from the distancing and isolation from COVID-19 restrictions. In spite of masks and personal protective equipment, “you could feel the warmth in those visits” said Jennifer Christophel Lichti.
During his last year, Louis survived COVID-19 but ultimately succumbed to the cancer in fall 2020. The palliative care team was again able to support Ian and the family during that time.
“After Pops passed away, Jennifer checked on me every month or so to talk and see if I was okay. Of course, I wasn’t, but it really helped. Then one day she called, and I told her I thought I was better. She said I sounded better. And I was feeling better,” said Ian. “She still checks in once in a while.”
Read this story at Northwest Kidney Centers website.