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Jennie Smith* is a young mother of two boys and wife to husband, James. So when she was diagnosed with colorectal cancer, she was determined to fight. She underwent colon surgery and a round of chemotherapy.
The side effects from the surgery and treatment were hard on Jennie. Frustrated, confused, and suffering from debilitating symptoms of both her cancer and its treatment, Jennie didn’t know what to do.
Her goal became getting well enough for her family. That’s when Jennie turned to palliative care.
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing relief from the symptoms, pain and stress of a serious illness. The goal is to improve the quality of life of both the patient and the family.
No, palliative care does not mean death.
However, palliative care does serve many people with life-threatening or terminal illnesses. But, palliative care also helps patients stay on track with their health care goals. In Jennie’s case, she wanted to maintain her strength and health to care for her family.
Palliative care improves the quality of life for those at any age, at any stage of serious illnesses. Jennie’s palliative care team took the time to talk to her about what she wanted and needed in her care. By combining pain and symptom management with emotional and spiritual support, Jennie’s palliative care team treated Jennie as a whole person.
Palliative care may be the most misunderstood phrase in treating serious illnesses. Half of patients don’t know what it is; the other half think it means they’re dying, and anyone who mentions it has given up on them.
“People think it means ‘I’m dying, my trajectory is not good,’ but that’s not the case,” said Dr. Cara McDermott, an affiliate researcher with the Hutchinson Institute for Cancer Outcomes Research. “Palliative care is really about symptom management and improving quality of life. It’s to palliate symptoms, to palliate suffering, whether that suffering is physical, emotional, spiritual or financial. It’s about focusing on you and your family and the best way for you to navigate your illness.”
“Palliative care has helped me an active mom to two young boys,” says Jennie. “it’s helped managed my pain and allowed me to keep going to their soccer and baseball games. I can even keep up with my PTA duties.”
Patients need to better understand their condition and choices for care. They need to improve their ability to tolerate medical treatments. And, they and their family need to be able to carry on with everyday life. In short, patients want to feel better, feel supported and have more control over their care.
Palliative care doesn’t mean you’re dying. “Palliative care has given me my life back,” said Angela James. Angelia has been living with a multitude of autoimmune disorders, including lupus, rheumatoid arthritis, scleroderma, and Raynaud’s phenomena. “I’m not so stressed. I know ways of dealing with things. I have only been with them for less than a year, and, you know, I’ve been dealing with my illnesses for 14 years and this is the best I’ve ever felt.”
Serious illnesses affect not just the body but the mind as well. Both get relief with palliative care.
Medications and other therapies are deployed to improve your quality of life. In this “whole-person” approach to treatment, maintaining dignity, resilience and spiritual needs are equally high on the to-do list.
Patients do activities that bring them joy; they also may work on their legacy – donating to favorite causes or participating in medical trials. With expert help, patients may examine their religious beliefs and values or gain a better sense of acceptance about their situation. Professional team members keep family and friends closely in the loop.
Patients actually have more control over their care, including decisions to accept or reject aggressive treatments. They aren’t giving up anything; they’re accepting an additional layer of support
Angela is able to live well because of palliative care. She is more involved with her family, is able to be social again, and is looking to start volunteering.
Palliative care promotes your best quality of life – as you define it. It is beneficial at any age and at any stage of illness. This differs from hospice care. Hospice is specifically for anyone who has been diagnosed with six months or less to live.
Palliative care is solutions for pain, symptoms, and stress of serious illness, or the treatments to cure and/or manage it. Hospice care patients choose to stop curative treatments.
Both types of care help you understand and navigate your medical options, provide extra support from board-certified physicians and nurse practitioners, and works with, not replaces, care you are receiving from your specialists and primary physician.
When a patient is facing a serious illness, he or she needs relief.
A palliative care approach to care can last for years, relieving suffering at every point from diagnosis to death. That means managing both the symptoms of disease and side effects of treatments such as pain, nausea and depression.
Jane, diagnosed with lung cancer in the fall of 2015, underwent surgery to have part of her lung removed. After the surgery she felt like she struggled with healing properly. She was overwhelmingly tired and soon learned, after a physician house call, that her blood count was extremely low. During a two-week stay at Virtua to run tests and accelerate recovery, the doctors discovered colon cancer and recommended another round of chemotherapy.
The hospital also suggested she also call a palliative care program.
Jane quickly discovered Samaritan’s palliative care program provided her a safe haven. Mackenzie Juckett, MS, APN, FNP-BC, is “so kind, caring, and professional.” Jane said, “I could count on Mackenzie. She is so genuine. I have needed so many medical items that she was able to obtain so quickly for me. Mackenzie makes me feel safe while going through my cancer treatments.”
After his retirement, Bob’s doctors diagnosed a more serious problem: cancer of the right lung. “It’s a direct result of my smoking,” he said, “even though I quit 23 years ago.” Bob was not a candidate for surgery, and weight loss after radiation taxed his energy even further.
“I basically became a couch potato,” said Bob, “walking was hard and the 10 steps to my bedroom even harder. I would tire out just washing my lunch dishes at the kitchen sink.” Fishing trips became too taxing, as well as another cherished activity, babysitting granddaughters Julianna, 6, and Sydney, 3. “Bob had babysat one or both girls every Friday since Julianna was born,” said Cheryl.
Bob’s cough worsened. “I couldn’t stop. It almost felt like a seizure,” he said. So Cheryl sought advice from Samaritan’s palliative care program on how to manage Bob’s symptoms at home, in cooperation with his family physician and lung specialist.
“Bob was so weak that we wanted to avoid another hospitalization,” Cheryl said. “Nurse Practitioner Jeannette Kates evaluated Bob. She prescribed medicine to manage his cough. She recommended a shake recipe to stabilize Bob’s weight and give him more energy. And she qualified Bob for home oxygen use – which has made a huge difference!”
Now, Bob has resumed “runs to WaWa” and twice-weekly fishing trips. He’s off the couch, feeling more productive at home, and treasuring babysitting the little girls who call him “Poppy” and “mean everything to me.”
Enjoying life means the world to Bob, Cheryl and their family. She said, “Palliative care is a wonderful approach to helping people who have a serious illness live so much better, and hopefully, stay active much longer than they would otherwise. It’s comforting to know, that as symptoms get worse, I’ll have the best help I can have for Bob – and that’s all I want.”
As the World Health Organization states, “All people have a right to receive high-quality care during serious illness and to a dignified death, free of overwhelming pain and in line with their spiritual and religious beliefs.”
Today, patients with cancer, cardiac disease such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), dementia, kidney failure, Alzheimer’s, HIV/AIDS and amyotrophic lateral sclerosis (ALS) are eligible for palliative care.
Pearl Singer, an ovarian cancer survivor who suffers from mild Parkinson’s disease, was first referred to palliative during a hospital stay for unrelenting pain.
Her pain − the result of scars and obstructions from seven surgeries in less than four years − was excruciating. It was rough, also, for her devoted husband of 50 years to stand by helplessly and watch her suffer. Leonard says, “From the time of his first hospital consultation, the doctor came every day for a week, including Saturdays and Sundays, until Pearl’s pain level responded. He just refused to give up!”
Pearl wistfully recalls her more active, less pain-ridden past. She stayed busy raising three children, including a son with autism, cared for her elderly mom and served as a volunteer driver for Meals on Wheels. Leonard pulls up a cherished photo he keeps saved on his iPad. It shows him and Pearl, carefree and happy, on a Hawaiian beach. “This is a reminder of what we’d like to get back to,” he says with a bittersweet smile.
“I had three good days last week,” Pearl says. One of them, Mother’s Day, was a high point. Pearl chose to spend the gift of a “feel-better” day doing something she really enjoys: walking around the Columbus flea market. She also enjoyed an anniversary dinner at Joe’s Crab Shack with her husband, son, daughter-in-law and grandchildren.
Pearl realizes that she will, unfortunately, live with some form of pain the rest of her life, but her palliative care nurse stresses, “Our goal when we started was to help work toward more good days than bad. What I’m hearing you say is that you have done some things you really enjoy with your family, that you are driving some days, going out to eat sometimes. Let’s hang in there, because five months ago, there were no good days. You are making progress.”
Palliative care helps people gain the strength to carry on with daily life and improves the ability to tolerate medical treatments. It also enables patients to have more control over their care by improving their understanding of treatment options.
Palliative care addresses:
If your family members also need help, palliative care can provide them emotional and spiritual support, educate them about your situation, and support them as caregivers. Some palliative programs offer home support and assistance with shopping, meal preparation, and respite care to give caregivers time off.
You may start palliative care at any stage of your illness, even as soon as you receive a diagnosis and begin treatment. You don’t have to wait until your disease has reached an advanced stage or when you’re in the final months of life.
In fact, the earlier you start palliative care, the better. Anxiety, depression, fatigue, and pain can set in at the beginning of treatment. Palliative care teams understand the stresses that you and your family face and can help you to cope.