|Biomedicine has accomplished marvels in prolonging life span. However, eight out of ten us will likely live with one or more chronic illness(es) for several years before eventually succumbing to it. As patients become progressively dependent on others due to disease related symptoms or medication related side effects, they experience a erosion of personal dignity. Many also fear the unknown — they worry about experiencing severe pain, air-hunger, nausea, profound fatigue and other debilitating symptoms.
For most, these distressing symptoms can be adequately managed with early institution of palliative care.Sadly most patients do not have access to palliative care. Thus, many patients are beset with suffering during the dying process — physical, emotional, spiritual and existential anguish that leads to a tremendous sense of uncertainty and needless suffering. One reason is the great shortage of palliative experts nationally and globally. Another reason is that patients are not referred to palliative care experts early in the trajectory of serious illness. As medical training does not really focus on primary palliative care skills, most doctors are not skilled in palliating their patients complex symptoms effectively.
We need to expand palliative care training in medical curricula. We also need to educate all clinicians from various primary care specialities and other subspecialities about how to best provide excellent management of pain and symptoms for all seriously ill patients in their care. In fact, trusted primary care providers are best positioned to mitigate their patient’s symptoms and help them navigate complex end-of-life decisions. With a combination of excellent symptom management and skillful communication from the time of diagnosis of serious illness, we can prevent suffering from escalating to a point where patients are in terrible distress and forced to contemplate extreme measures such as PAD for almost all patients.
As PAD has attracted significant public attention, more and more patients are likely to ask their doctors about this issue. A vast majority of patients who request PAD are not likely to be eligible for PAD. Of the small fraction of patients who are eligible, only some will ask for a lethal prescription, a smaller sub-set will actually use the prescription to procure the PAD medication and ultimately a sliver of the patients asking about PAD will actually ingest the medication to end their lives. In the meantime, most patients at the end of life still do not have access to quality care aimed at alleviating their suffering and focusing on what matters most to them. We hope that laws like the California End of Life Option Act will spotlight the great national need for early advance care planning, excellent pain and symptom management and holistic care for all seriously ill patients.
What do we mean by early access to palliative care? Any patient with a serious illness ( cancer, heart failure, kidney failure, ALS, MS, advanced lung disease etc) must have access to basic palliative care from day one of diagnosis. This type of basic palliative care can be provided by any doctor from any medical specialty who has basic training in palliative care competencies. (click here for the basic palliative care competencies list). As patients develop more complex symptoms and struggle with difficult decisions, they need to be seen by a palliative specialist.