Advanced Care Planning, Empowering Patients for a Peaceful Death

Abstract

In the early 1900’s, Americans had a life expectancy of about 50 years. Childhood mortality was very highand an adult who lived into their sixties was considered to be doing pretty well. Prior to the advent of differenttypes of antibiotics, people would die quickly of infectious disease or accidents and medicine only really focusedon caring and comfort. Since then, there has been a shift in medicine’s focus. New science, technology andcommunications have shifted the way Americans treat incurable diseases and have promoted the idea of aggressivefighting as well as to keep patients alive at any costs. The internet has allowed easy access for patients to do onlineresearch and to know the treatments for diseases and the availability of trials. This has promoted the ideathat every disease or cancer is curable if the patient does exactly as the internet says. It has hindered the idea ofcompassionate care and dying with dignity so that a patient can stay alive at all costs, even in a vegetative state.In the last two decades, there has been a significant expansion of palliative and supportive care services in theUnited States. This has including the development of a specialty for palliative care medicine with a boardcertification in hospice and palliative medicine. A challenge to the field has been the reluctance of physicians torequest palliative care consults in a very timely manner as well as relinquish care of their patients. A commonoccurrence in the United States, at many cancer centers, is the treatment of chemotherapy and radiation upuntil the day before a patient dies. At this point, the physician ends up throwing up his or her hands withnothing left to offer the patient or its family. However, what we have been finding is that presently there are nowmany oncologists who are willing to refer patients to palliative care for specific management of difficult paincontrol issues. At the Moffitt Cancer Center, we have a Palliative Care consulting service along with a PalliativeCare Fellowship program where we work with cancer teams to provide resources to them when they are runninginto difficulties with their patients. Typically, we step in when first line treatments have failed, symptoms haveshown no signs of decrease, or when the primary teams have exhausted their standard management options.Our hope is for the primary care teams to be able to manage basic symptoms themselves and only call on thePalliative Care team when they have surpassed their comfort zone. For example, the Palliative Care teamwould step in if a patient’s dosage of medication was out of a primary team’s spectrum. Other uses of thePalliative Care team include having the end of life discussion with the patients to find out what their expectationsare of their treatment, what their concerns are and what their requests are. Normally treating primary teamsare very uncomfortable in having this discussion with their patients due to the feeling that they are giving uphope or the fact that they are letting patients know that the end of the road is near. The Palliative Care team canthen be called upon to come in and transfer the care from the primary team to the "death team". At Moffitt wehave instituted a number of strategies to make this transition acceptable and more beneficial for the patients.One of the strategies that we used is an Advanced Care Plan. By having a consultation at the time when thepatient is diagnosed, we are able to speak with them about what it is that they see in terms of what would beacceptable to them. We use the Project Grace Advance Care Plan which was developed by a physician and isvery simple to understand. With this tool, we are able to bring up the discussion while trying to focus in on thepatient’s spirituality and the coping mechanism as the cancer patient. This allows the conversation of end of lifetreatment preferences and what the patient’s typical desire is for life sustaining measures.