Palliative care is for the living.
I am a 9-year survivor of stage IV anal cancer. I have endured surgeries and various rounds of treatment that included chemotherapy and radiation on two separate occasions. Those treatments ravaged my body and my mind. They applied stressors to my caregivers, my family and all those who care about me in ways that words usually fail to encompass. What happens to patients throughout and after their ordeal with life-altering diseases? It’s different for everybody. But I do know this to be true: There is an enormous need for palliative care.
Many think that palliative care is only for the dying and simply a synonym for hospice care. The two are almost always mentioned in the same context and in the same breath. Say it with me, “palliative care and hospice.” The two have been mentioned together so often that many people believe they are one in the same. These words must be untangled as the first and most important step in a world where palliative care is offered to all who need it. I say palliative care is for the living. It should be incorporated on the day of diagnosis at any age and any stage of cancer.
Palliative care uses an interdisciplinary approach to address the symptoms and psychosocial stress for people who are living with life-limiting illnesses at any stage. The goal is to improve quality of life, and the care team usually involves physicians, nurses, physical and occupational therapists, speech-language pathologists, and more.
As described, it seems easy enough. Assemble the team of experts, work with the primary care physician, consult physician specialists as needed and there you have it — palliative care. If only it were that simple.
As I have found through my advocacy work, nothing requiring a paradigm shift is ever easy. To me, it seems as if oncology is comfortable with the current definition of palliative care and the ensuing end-of-life routine. A patient’s cancer progresses, they exhaust all means of treatment, they face a difficult truth, and hospice is consulted in their final days to make them as comfortable as possible so they can enjoy what small window of time they have left.
Enter me and thousands of other patients, stage left. I’m still standing well beyond my predicted demise. I didn’t die “on cue” and my window of time left to enjoy my life has eclipsed all expectations. While I was in active treatment, I received some palliation: pain management, wound care, a dietary consult while hospitalized. But most of the last nine years of my life have been spent outside of hospital walls and with no formal palliative care at all. My care consisted of periodic scans to check for cancer recurrence and brief physical exams. I was never really evaluated for side effects, and the “wait-and-see” approach was utilized. I never filled out a quality-of-life survey for oncology.
After about three years of suffering, I took charge of my own symptoms and became somewhat of a self-advocate. However, my ability to “see around corners” as to what was and is in store for me as far long-term side effects is limited. I often find myself in front of a specialist wishing I had gotten there so much sooner, if only I had known. I am a registered nurse and one might think that it would be a huge advantage. I am here to tell you that it’s not, and for those cancer patients with no medical background, or family members with such, I expect they struggle a little bit more, but the struggle is real for us all. And I feel bold enough to say that not only has cancer been life altering, it has potential, in itself, to be life shortening. So, when I state, “These long-term side effects are killing me.” There may be a sad truth in those words.
You might be asking yourselves, “How bad can it all be? After all, you are alive.” I can only speak for my cancer type, as each have their own bevy of side effects, both short and long range. My physical effects have been concentrated in my pelvis and primarily a result of the radiation treatments. In the beginning it was sexual dysfunction, chronic UTIs, painful diarrhea, and an overwhelming fatigue. But over time, it has progressed to pelvic floor insufficiency which has led to incontinence and chronic weakness. I was diagnosed with bilateral avascular necrotic hips for which one hip has been replaced and the other is pending. I have chronic sciatica and low back pain. I have had serial bouts of pneumonia due to radiation treatment given for a recurrence in my lung 5 years ago.
It has taken me years and a bit of courage, but I have assembled my own team of experts, leaning on my PCP to help me get the consults I need. He doesn’t know what’s around the corner for me either and often shrugs his shoulders when I ask him what to expect next. I have been in physical therapy for over a year in hopes of regaining some pelvic floor strength to improve my walking endurance, fecal incontinence, and restore some sexual function. I have a GI doctor now to help me with my bowels. He has warned me that bowel obstructions could be in my future and has placed me on a diet to help mitigate the risk and a daily fiber regime to help me become more predictable. I have an orthopedic doctor looking after my necrotic hips. There is a pulmonologist to care for my radiation damaged lungs and thwart off pneumonia with steroids and an antibiotic when a seemingly mild cold begins to settle in my chest. I have a pain management physician that injects my back to keep my sciatic and low back pain at tolerable levels. This last year, I have added a post-traumatic stress disorder (PTSD) counselor to help me cope with it all. After knowing all this, does that alter any thought that I should simply be happy to be alive? I, and the many silenced survivors that I speak for, think not. We all should be able to enjoy the best day we possibly can. Palliative care provides an infrastructure to do just that. It’s not a cure all for what ails the survivor, but it does provide the support needed to minimize or perhaps mitigate both short- and long-term side effects experienced by them.
I think education of both the medical community and the public is vital. Untangling the word hospice from palliative care is at the core of this education. Healthcare facilities could organize palliative care clinics that can provide services for both the in patients and out patients in their communities. The idea would not be to replace primary oncology care, but to become part of the support team for the patients that receive it. Patients need a place with caregivers trained to know what’s around corners; a place to ask vital questions; a place where questions will be asked of them concerning their wellbeing; place where their wellbeing is addressed and supported in a centralized way. Palliative care provides just such a touchstone.
The goal of palliative care is to improve quality of life. I believe that each day should be the best day it possibly can for people diagnosed with cancer, whether it be three days, three months, three years, or three decades patients deserve to feel the best they possibly can. Again, I say palliative care is for the living. May I have some please?