When discussing health care reform, if we cannot even be clear that “advance care planning” is in no way, shape or form the same as a “death panel,” how will we ever be able to talk about the real (and factual) challenges facing the Medicare program and its long-term sustainability?
Let’s be clear: there are no “death panels” included in the health reform bills adopted by the House of Representatives and the Senate, although misinformation on this topic has been swirling for months. For example, last August during the Congressional recess I was quite distraught when my own Senator Charles Grassley stated in an Iowa town hall meeting that he was worried that efforts to increase the efficiency of Medicare or to create an Independent Medicare Advisory Commission would indeed mean that the federal government would be making decisions about when to “pull the plug on Grandma.” More recently, the clause in the House bill that allowed reimbursement to Medicare providers who hold “advanced care planning consultations” with their patients has been equated with a “death panel” deciding when a senior would die. Nothing could be further from the truth.
Having studied end of life care in graduate school and writing about advance care planning and palliative care for my dissertation, I’d like to set the record straight. While advance care planning1 and palliative care2 interventions are most frequently provided to patients with terminal illnesses, they are most appropriately offered (and provided) to all patients and their families suffering severe, chronic, and terminal conditions. Advance care planning discussions are not meant to be implemented only at or near the end of life, but rather at the time of a serious, chronic, or terminal diagnosis and throughout the continuum of the disease, as appropriate. Palliative care is accomplished when the team of providers, including physicians, nurses, social workers, pastors, and many others work together to manage the physical, mental, and emotion discomforts that often accompany the illness. This often includes alleviating patient pain, ensuring family needs are met, and attending to the patient's spiritual needs. Perhaps most importantly, it involves allowing patients and their families (in consultation with providers) to decide the best course of treatment to make their lives as meaningful and of the highest quality possible, whether they live six days, six months or 16 more years.
One important point that must be made to clear up another large part of the misinformation surrounding end of life care: the goals of advance care planning and palliation are NOT to ration care to old or sick people or to contain costs. Sometimes, however, patients who engage in advance care planning and who receive palliative services actually make the personal decision to receive less rather than more health care services. Often when given adequate information about their condition and prognosis (e.g., that more treatment may make them feel quite sick or keep them in the hospital a long time but with little chance of extending their life much longer,) patients prefer quality of life over quantity.
Given their decision, the costs to them and to the Medicare program may be (but not always is) less than if they had not engaged in advance care planning or chosen to receive palliative interventions. It is critical to point out, however, that if savings are achieved they are not the result of “big brother” stepping in via a death panel or independent outside body rationing care. Rather, lower costs are the byproduct of true patient-centered care: patients, along with their families and medical teams, making rational and personal decisions to focus on the quality of their life.
Advance care planning and palliative care also do not preclude medical intervention. Instead patients receive treatments that keep them feeling as good and pain-free as possible in their homes or communities rather than in hospitals, spending time surrounded by family and friends, and doing the things they find most meaningful.
As negotiations begin on the final version of health care reform legislation, I hope we will not hear more scare stories about how common sense reforms will create death panels or rationing. Rather, I hope people can appreciate and support the value of including reimbursements for advanced care planning consultations that focus on helping patients make the best decisions for themselves and their families.
1 Advance care planning involves taking the time to learn about health care services, often including end-of-life care options, early on in the continuum of a severe, chronic or terminal illness. The goal is to have discussions with family and health care providers before a health crisis so that the patient’s wishes are known about how they prefer to address the many "ifs" and ambiguities of living with their illness.
2 Palliative care is the comprehensive approach to treating serious illness that focuses on the physical, psychological and spiritual, and existential needs of the patient. Its goal is to achieve the best quality of life available to the patient by relieving suffering and controlling pain and symptoms.