Palliative care is often confused with hospice and end of life care, but it is so much more than that. Dr. Sunita Puri, Assistant Professor of Clinical Medicine and Medical Director for Palliative Care for Keck Medical Center at USC defines it this way, “Palliative care is about taking care of the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness.” She adds that palliative care provides a way for doctors to use a new kind of vocabulary with patients and their families, talking about the way our life goals can change with a serious medical condition and that palliative care provides a method to plot out a treatment plan that ensures a good final chapter, on our own terms.
Hospice and Palliative Care Are Not Synonymous
Hospice is a specific kind of palliative care that takes place in the weeks and months before a person comes to the end of their life. It most often takes place in the patient’s home where they can be surrounded by family and their familiar belongings. End of life care is another separate form of palliative care that is geared primarily toward pain management and comfort in the final days and hours of life. Hospice and end of life care do not cover the full spectrum of services available with palliative care.
In fact, it is very important to understand that palliative care is not always about death. That is a misnomer, common in many communities, including in various healthcare circles. It is possible for someone with cancer or another serious diagnosis to enter into palliative care, continue their medical treatments and eventually be healed or cure their disease. It is not as common, but it does happen. Moreover, plenty of studies now show that people with access to palliative care are able to extend their life expectancy and report a higher quality of life for their final chapter than those without it.
The Important Role of Language in Palliative Care
Very often, patients and their families will adopt a “fighter” stance, choosing to view their situation through the lens of taking the power back and doing “whatever it takes” to beat their disease. This is a very common response for many and palliative care is not intended to darken the lightness of spirit that comes from that decision to go to battle. However, sometimes in our verve to display a fighter mentality, to battle “at all costs” we can also end up making choices for treatment that actually diminish our quality of life. Treatment choices are a very personal task and palliative care physicians are adept at providing a big picture scenario that includes both the pros and cons of various treatment options. When given the larger view, sometimes a patient and their family will decide to opt for higher quality of life over stressful, painful treatment.
For trained palliative care professionals, the language of healing and comfort do not always include words like fighting or battles or “whatever it takes” because a patient and their family may have opted for a more peaceful route, accepting their illness as a part of the life they still have and seeking out the highest version of life experience for the time they have left, rather than focusing on an ongoing battle. Palliative care is more about finding meaning, peace and pain management than it is about fighting off death. If a patient chooses the fight, that will be incorporated into the experience, of course. But if they choose not to fight, there is a place for that approach as well.
Best to make some decisions early than to wait until they are very difficult for everyone.
Very often, when a loved one is facing a serious diagnosis, our initial reaction is to avoid discussions about end of life care. Out of kindness and empathy, we say only positive things and speak in terms of getting well and beating the disease. And that is normal. Of course it is. But early on is the best time to at least start to have those difficult conversations. Decisions are easier to make when we are not in pain or dealing with the stress of being very sick. Palliative care should be part of those discussions because it opens up bigger conversations about what our lives are meant to be, how we want to spend our days. Having to make those bigger decisions later in the process can make the whole experience much more difficult for everyone. Families that can talk openly about their healthcare and end of life planning with each other and with their healthcare providers will be much better prepared to make the most of their valuable time together.