Living Well with Serious Illness: Palliative Care Improves Quality of Life with Ovarian Cancer
As a speech language pathologist for young children, Ilene’s skills as an educator, careful listener and problem solver were keys to her career success. These factors also have played an important role for her through the many years she’s been treated for advanced ovarian cancer. It was a surprise diagnosis for the 68-year-old New Yorker that came in the fall of 2015 and changed her life dramatically.
She had a growing number of symptoms and side effects from treatments and surgery. When her cancer doctor referred Ilene to the palliative care team, Ilene didn’t know about the medical specialty. She had no idea how important it would be over the many years of her cancer journey, which included several recurrences. But ever-the-educator and problem solver, she went to the first appointment hoping for help to address many sources of discomfort.
What is Palliative Care?
Palliative care is specialized medical care for people living with a serious illness. This type of care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.
Palliative Care Presents Many Options to Manage Side Effects
With a history of irritable bowel syndrome, Ilene landed in the emergency room in Spring 2015. She had severe gynecologic and abdominal pain. But tests over many months did not provide answers. After another emergency room trip in the Fall, and more tests, Ilene was diagnosed with stage 3 ovarian cancer. She was immediately hospitalized.
“Even prior to my diagnosis, the pain level was absolutely terrible. I went into chemotherapy almost immediately after my hospitalization. Neuropathy and stomach pain from the medicines were excruciating, along with issues with fatigue. I was pretty much bedridden,” says Ilene.
Ilene told her cancer doctor about all the symptoms, and the doctor recommended several treatments. When the pain and other symptoms continued, the doctor referred Ilene to the cancer institute’s palliative care team.
“When I met with the palliative care doctor, quality of life issues came up almost immediately. What were my hopes and dreams? How did my fatigue affect what I did every day? What did I do every day? The focus was on how to help me get back to as much of what I used to do as possible. I felt a partnership that we were there together to try to figure out not just side effects, but the effect of those side effects on my life,” describes Ilene.
Diana Martins-Welch, MD, the attending palliative care physician at Northwell Health, presented many new options that neither Ilene nor her other doctors knew about. Over the years, they have discussed ways to manage the different side effects. These include medicine, alternative options, lifestyle changes, and referrals to other professionals.
“One of the things she did early on was to change medications to a liquid form so that I could control it very carefully and experiment with very tiny doses,” recalls Ilene.
In addition, Ilene has always used natural medicine in her routine health care and was encouraged that Dr. Martins-Welch was open to continuing with that approach. This led Dr. Martins-Welch to connect with a medical colleague with expertise in natural medicine.
“I know when to bring in my associate who has access to natural medicine databases and is able to guide us, such as saying, ‘She can take turmeric and it won’t affect this chemotherapy regimen,’ or whatever alternative regimen she’s trying to incorporate into her care. I’m able to facilitate that communication,” explains Dr. Martins-Welch.
Ilene adds: “Because of Dr. Martins-Welch’s connection to so many other professionals, she’ll make a call right then and connect me with somebody. In one case, it was somebody who did acupuncture. The referral is in that moment. You walk in with complaints and issues and worries, and you walk out with resources.”
Palliative Care Is Based on Each Patient’s Needs and Quality of Life
The conversations between Ilene and Dr. Martins-Welch often focus on two big topics: how Ilene copes with living with ovarian cancer, and strategies Ilene can adopt to spend time with friends and do things she enjoys.
“Depending on how bad she’s feeling, it really takes a toll on the rest of her life. If she’s too fatigued or in too much pain to go for a walk in the park or to the museum, that really makes her feel down. These are things that she enjoys doing,” notes Dr. Martins-Welch.
While Ilene’s needs change, she knows she has access to Dr. Martins-Welch and the support of palliative care. During the four plus years of their relationship, Ilene has stayed connected to Dr. Martins-Welch mostly through the outpatient clinic – in person and through email or phone calls.
“There may be a period of a few months where I haven’t heard from her, and times where we’re seeing each other monthly. That’s the beauty of this, she doesn’t have to come in all the time. If things are flaring up, she knows to contact me,” says Dr. Martins-Welch.
This was also the case when Ilene was treated in clinical trials out of state, even when those centers offered a local palliative care referral. This makes sense to Dr. Martins-Welch: “It’s really hard to have to rehash your whole history with someone when you’ve already established that foundation with somebody else.”
The value of palliative care also proved itself when Ilene was hospitalized after surgery for bowel obstruction. The hospital palliative care team was called to check on Ilene due to her symptom burden and related anxiety. They transferred her to the palliative care unit, treated the nausea and anxiety, and gave her a calmer and quieter recovery space – compared to the typically busy and noisy surgical wing.
Ilene describes it as a life-altering change: “On a day that I particularly was struggling, pain-wise and emotionally from the stress of being in the hospital for all those days, with a feeding tube and waiting for surgery, they recommended a tiny medication that gave me peace that day. I really do have to say that saved me.”
llene feels fortunate to have family and friends, and an incredible cancer team, a social worker, a psychologist, and support groups. And yet, she realizes that palliative care provides an extra layer of support that blends all the pieces together for her and her other medical providers.
“I feel like a whole person when I’m sitting in the office with her. I am not a medical diagnosis. I am a person with a family, with a history, with a current life that needs to be managed,” observes Ilene. “You can have family, and you can have friends, and love them for all they do. But to have a medical person walk side by side with you on this journey, that really is an extraordinary gift.”
To learn more about palliative care and how it can help you or someone you love who is living with cancer or other serious illnesses, visit GetPalliativeCare.org.
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