While we often would rather focus on health rather than disease, sometimes it is important to address what makes us uncomfortable. But death is the 800 pound gorilla in the room. We can’t escape its grasp, yet too often, we ignore it and won’t discuss it, even when it’s near. It’s as if by mentioning it by name, we’re committing someone to a sure death. But I have a surprise for you: even if we don’t talk about death, we will still die, sooner or later.
Sure, physicians and lay people alike aren’t very good at using their crystal balls to predict the exact time of death. But with certain diseases and conditions, we’ve developed enough experience to narrow our guess down to weeks-to-months or sometimes days-to-weeks or so on.
Cancer is one of those illnesses where we can often make a credible guess. Yes, we’ve made tremendous strides over the last few decades against this dreaded diagnosis. In fact, some forms that were once as good as a signed death sentence are now manageable. With others, we even dare breathe that other “C” word, cure. But still too often, cancers either present too late, having already spread to different parts of the body, or become resistant to all the surgeries, chemotherapies, and radiation that we can throw at it.
These patients, the ones with metastases, are the ones for whom we should discuss hospice and palliative care earlier rather than later. Realistically, we should offer palliative care even at the beginning of any treatment to help all patients and their loved ones cope with side effects and adverse reactions. But later on, once it’s clear to us, the physician, that things aren’t going so well, rather than consider death the equivalent of defeat, we really need to take the initiative and start discussing hospice & palliative care, even as we consider another “Hail Mary” pass to rally the troops. In truth, we never win. Death always trumps life.
The American Society of Clinical Oncology just released a new statement that care needs to be individualized for patients with advanced cancer. That’s code for actively involving the patient in his/her care, specifically asking for their individual goals and care preferences. For many, it’s not death that is feared, but rather the final days right before. Patients don’t want to suffer (however, one defines that physically, mentally, emotionally or spiritually) or to be left alone in the hospital’s cold sterile environment. Most want to be at home surrounded by loved ones after having checked a few more items off the bucket list. This is where hospice and palliative care medicine step in, to offer comfort and compassion, when no cure is possible/realistic, to both the patient and the family.
Incredible as it may sound, in the case of metastatic non-small cell lung cancer, in a study published in the New England Journal of Medicine last August, those patients randomized to early palliative care had less aggressive care at the end of life (as expected by definition), yet reported better mood, better quality of life, and surprisingly, longer survival, living on average almost 3 months longer (11.6 months compared to 8.9 months) compared to those who received standard oncologic therapy alone.
So it’s about time that we acknowledge that 800 pound gorilla. To get the conversation started, an informtative piece was written online in USA Today. Let’s start talking about hospice and palliative care options.