Palliative Care: It’s Not Hospice
To some, “palliative care” is synonymous with hospice. But in reality, palliative care is simply the delivery of health-care services designed to keep the patient comfortable – throughout the latter stages of the cancer journey, not just at its very end.
Scary word, isn’t it? To many of us, hospice goes hand-in-hand with death; not until the last days does a survivor’s family contact the hospice folks and ask for their help. Studies show that the average length of hospice care is just 3 weeks, almost always delivered to the patient in her home after she’s discontinued treatment.
Many of us hearing the term “palliative care” assume it’s a synonym for hospice: care at the end of life. But since the late 1970s, palliative care (the care of patients who’ve been told their cancer will eventually kill them) has become a growing movement and, in recent year, has even become a medical sub-specialty – like oncology, or neurology.
In fact, palliative care goes way beyond what hospice offers; it’s an opportunity for patients with terminal cancer to live more comfortably (both physically and emotionally), and sometimes even to live longer. Palliative care doesn’t seek to cure a serious illness; instead, its goal is to ease the pain – physical, emotional, and spiritual – that accompanies that illness.
So, why isn’t palliative care available to all patients facing terminal cancer?
Because the patient, the oncologist, or both are understandably reluctant to agree that cancer treatment hasn’t worked.
A recent study by ASCO (American Society of Clinical Oncologists) addresses this “collusion of hope” on the part of both doctor and patient, and the poor outcomes it can produce. Many oncologists see their job as fighting cancer to the end – no matter how bitter that end may become.
And many patients, fearing death and holding onto hope at all costs, go along with their oncologist’s advice about treatment, believing that one more round of chemo, one more course of drugs, may put their cancer into remission.
In fact, for those with solid tumors (e.g., most forms of breast cancer), if three different treatment regimens have failed, anything further is highly unlikely to work. Patients opting to continue treatment may actually be shortening their life, as the toxicity of the chemo needed to treat their advanced, treatment-resistant cancer may very well prove fatal.
For this reason, ASCO has come up with guidelines around the shift from cancer treatment to the delivery of palliative care, guidelines designed to encourage patients and oncologists alike to recognize and accept when “enough is enough.”
The ASCO guidelines encourage palliative care to begin when all of the following have happened:
•Active treatment has stopped working;
•The patient is unable to carry out everyday activities, spending most of the time immobile (in bed or a chair);
•Participating in a clinical trial isn’t an option. (“Cancer,” 2012)
Dr. Thomas J. Smith, director of palliative medicine at Johns Hopkins and a member of the ASCO task force that created the new guidelines, says, “We can’t always make people live longer, but we can help them live better.” He adds that patients who hold onto hope of a cure long after that possibility has almost certainly disappeared are denied “the right to decide what’s important to them and what they want to do with the time they have left.” (“Cancer,” 2012)
Are you close to a survivor who’s been handed a terminal cancer diagnosis? (Is that someone you?) Letting go of hope for a cure isn’t “giving up;” it’s acceptance. And acceptance is the first step towards making your final weeks or months less stressful; more comfortable; perhaps even happier.
So when your oncologist mentions palliative care, listen to your options. And if s/he doesn’t; if s/he continues to fight your cancer without regard to your quality of life – then bring it up yourself. Most cancer centers have palliative care teams dedicated to your comfort; it’s up to you to invite them into your life – a life that may be infinitely better with their loving ministrations, whatever its length.
Davis, M. (2013). Early integration of palliative and supportive care in the cancer continuum: Challenges and opportunities. Retrieved from http://meetinglibrary.asco.org/content/18-132
Cancer directed therapy at the end of life. (2012, October). Consumer Reports on Health, 24 (10), 7.