We would have less trouble promoting Palliative Care if we called it “Alleviating Suffering.”
Doctor: “I know you’re suffering; I’m going to refer you to someone who can talk to you about ways to help alleviate your suffering.”
Result: Easier for doctor to say, easier for patient to hear.
What if it was a normal part of healthcare to be concerned with alleviating suffering at all stages of life, whatever the illness, whatever the suffering?
Problem: Alleviating suffering by addressing aspects of the whole person (physical, psychological, social, spiritual) using a multitude of disciplines and approaches (medical, social work, chaplain, dietician, aides, volunteers, alternative and complementary therapies) is not a part of healthcare throughout the lifespan. It just isn’t. Our current healthcare system is fragmented; it is based on treating one aspect of health at a time, by one person who specializes in that one aspect. We are not looking at the forest for the the trees. Or however you say that. And people, by the way, are suffering throughout life.
By inserting the “specialty” of “Palliative Care” at the end of life, it is linked with hospice care. In our current system, we have made palliative care (alleviating suffering) a specialty, which means making a referral to yet another team of “experts.” We have segmented “alleviating suffering” apart from healthcare throughout the lifespan. What this means is that someone must be really sick and dying in order to receive palliative care. Palliative care has come to mean giving up or comfort care, when really it is just good healthcare. I say that palliative care shouldn’t be a specialty; it should be part and parcel of good healthcare in all settings and in all stages of life and illness. Then it would be more palatable, more accepted, and easier to obtain. It would not be a last resort.
We are going about this backwards. Really, “palliative” concepts should be a part of good healthcare from the beginning. But most of us don’t get good healthcare. We only seek and receive medical care. And most medical care only addresses the physical person, and not even usually the whole physical person, but just one current specific concern. How many times have you gone to a general practitioner for a backache and been told that you would need to schedule another appointment to talk about your plantar fasciitis? And many of us don’t even see a general practitioner – we just go to a specialist to begin with. We pick the area that is the biggest need and then see that specialist. If you have other needs, you have to get a referral to another specialist. I know this is my dilemma. My backache may be stemming from many causes – overwork, poor posture, stress, a recent injury or strain, foot problems, my exercise routine – but no one in my medical care system is going to address all of these issues and help me coordinate care. I’m not receiving palliative care. (See underlined section above for definition of palliative care.)
If Palliative Care was a part of healthcare throughout life, it would naturally be a part of end-of-life care. If addressing the whole person, not just the spleen, was a practice throughout life, it would not be so difficult to make the shift to addressing the needs of the whole person at the end of life.
I am not going to say it. I am not going to be accused of romanticizing the past again. I am not going to say that back in the old days the small town family doctor did know her patients well and did do a better job of addressing all of their needs. There, I didn’t say it. That is such a limited view
But, really, if we had a healthcare system that was based on addressing all of a person’s needs, perhaps a general practitioner-nurse-social worker-midwife combo-pack at every clinic, and it was free, and you could drop in anytime and talk about all of what was bothering you, we would have a lot more “alleviation of suffering” going on. And a lot more informed choice and preventative care going on. Not to mention fewer hospitalizations, less over use of technology, fewer health crises, less overall pain and suffering, etc., etc.
And guess what? In this model of being able to address the whole person and all of their healthcare needs, Palliative Care would be going on throughout life. The concept of alleviating suffering by addressing all of a person’s needs, not just treating a physical condition as if it was separate from the body-mind-spirit, would be normal, it would be included, and it would be familiar. It wouldn’t be so foreign to healthcare practitioners and patients to understand that there are times when physical treatments only, treating with more medication, more procedures, more tests and more hospitalizations, is not necessarily what the patient wants; it’s not necessarily meeting their goals and improving their quality of life. Patients want whole-person care, not just at the end of life. Palliative care should be included in all healthcare, period.
Specialists are good. Specialty teams are good, especially palliative care specialty teams But here’s another problem with the system: Currently, most palliative care is hospital-based, and it is only offered when a patient has about 1 – 2 years to live. A referral from a doctor in the hospital is necessary in order for a patient to receive care from the palliative team. Requiring a specialist to make a referral to palliative care is problematic. At the very core of most hospital specialist is the belief that if I just look harder and do more, I can still cure this patient. Palliative care is associated with defeat, of giving up, of accepting death. Specialists, by definition, are not looking at the whole person! They specialize in one aspect of the person – a physical aspect. Requiring them to step back and look at other aspects, and then to make a referral that is perceived as an admission of failure, is not usually happening! It’s too late. Not literally, but figuratively. It’s too late in the system. We need to incorporate the concept of palliative care much earlier.
How do we make this change?
- Patients asking for it – yes
- Palliative care teams in the hospital educating specialists – yes
- Doctors in clinics planting the seeds for it – yes
But what else? How can we really make palliative care a part of normal healthcare? This is the question people are asking me. I have this conversation every week with a new person. We talk about this at Death Cafe. I talk about it in class, with my friends, even at parties. We have to make “alleviating suffering” a common concept that is addressed throughout life. Because suffering is a part of life.