I am concerned about a new mantra afoot: that palliative care–unlike hospice care– is not “giving up” but is addressing improved symptom management and quality of life (QOL) for all patients with advanced disease. I am disappointed as I read opinions of many champions of early palliative care in the perpetuation of this myth— both outspoken views, or by sheer inference— that palliative care is increasing QOL while hospice care is requiring “giving up” (also synonymous with the very end of life). Making such a distinct difference between palliative care and hospice IS NOT helping the average person understand either palliative or hospice care.
As physicians consider the benefits of early concomitant therapy, recognizing the value of a palliative care referral at the time of a patient’s serious disease diagnosis, they have also hopefully acquired an understanding of hospice philosophy demonstrated over the last 40 plus years in the US. Hospice is not about “giving up”. Anyone who has provided hospice care can describe numerous conversations with patients at the time they signed up to use hospice services, clarifying that deciding on hospice did not require “giving up”—hospice services would contribute to needed support and encouragement to live fully, all their remaining days, weeks and months, with quality of life as a focus. Because someone no longer seeks curative treatment does not equal “giving up”. And because someone does not want to continue with multiple medical interventions, regardless of the benefits versus risks, they too have not “given up”. And because someone’s physician makes the deplorable statement, “There’s nothing left to do” does not mean one should “give up”. Treatment choices should be determined by the person whose life is being lived with a serious, even terminal illness (since as I have mentioned in the past, being human is indeed a terminal diagnosis, we all might consider our decisions and complete that advance directive!).
Please, palliative care advocates, do not refocus the public on palliative care versus hospice care, as though these two entities are the anthesis of one another, with the caveat that palliative care is not about “giving up”. We will be going back decades if this is how the medical community now sells palliative care services. The entirety of palliative care services is a continuum, a means of recognizing serious illness and demonstrating the right care at the right time, according to a person’s self determination. Honest and multiple conversations are needed. Palliative care providers can actually help people in a sometimes long journey of debility and illness: to have symptoms better managed; futile care perhaps less frequently sought; adjustments made easier to the ongoing losses incurred with serious illness; and care focused on the quality of every day that is lived.
We are often the light bearers in a culture that denies death will happen to all of us. Medical professionals who are having honest conversations regarding palliative care earlier on in the continuum of life threatening disease —whether this leads to the determination to use hospice services or not—must include fair sharing of all treatment options, thereby assisting in decision processes without their personal bias. Please, please don’t compare hospice to “giving up” and for “the very end of life”, thereby relegating it to only those who believe they are soon dying and palliative care another direction to take altogether.