Advanced care planning--empowering patients for a peaceful death.
In the early 1900's, Americans had a life expectancy of about 50 years. Childhood mortality was very high and an adult who lived into their sixties was considered to be doing pretty well. Prior to the advent of different types of antibiotics, people would die quickly of infectious disease or accidents and medicine only really focused on caring and comfort. Since then, there has been a shift in medicines focus. New science, technology and communications have shifted the way Americans treat incurable diseases and have promoted the idea of aggressive fighting as well as to keep patients alive at any costs. The internet has allowed easy access for patients to do on-line research and to know the treatments for diseases and the availability of trials. This has promoted the idea that every disease or cancer is curable if the patient does exactly as the internet says. It has hindered the idea of compassionate 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 the United States. This has including the development of a specialty for palliative care medicine with a board certification in hospice and palliative medicine. A challenge to the field has been the reluctance of physicians to request palliative care consults in a very timely manner as well as relinquish care of their patients. A common occurrence in the United States, at many cancer centers, is the treatment of chemotherapy and radiation up until the day before a patient dies. At this point, the physician ends up throwing up his or her hands with nothing left to offer the patient or its family. However, what we have been finding is that presently there are now many oncologists who are willing to refer patients to palliative care for specific management of difficult pain control issues. At the Moffitt Cancer Center, we have a Palliative Care consulting service along with a Palliative Care Fellowship program where we work with cancer teams to provide resources to them when they are running into difficulties with their patients. Typically, we step in when first line treatments have failed, symptoms have shown 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 the Palliative Care team when they have surpassed their comfort zone. For example, the Palliative Care team would step in if a patients dosage of medication was out of a primary teams spectrum. Other uses of the Palliative Care team include having the end of life discussion with the patients to find out what their expectations are of their treatment, what their concerns are and what their requests are. Normally treating primary teams are very uncomfortable in having this discussion with their patients due to the feeling that they are giving up hope or the fact that they are letting patients know that the end of the road is near. The Palliative Care team can then be called upon to come in and transfer the care from the primary team to the "death team". At Moffitt we have 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 the patient is diagnosed, we are able to speak with them about what it is that they see in terms of what would be acceptable to them. We use the Project Grace Advance Care Plan which was developed by a physician and is very simple to understand. With this tool, we are able to bring up the discussion while trying to focus in on the patients spirituality and the coping mechanism as the cancer patient. This allows the conversation of end of life treatment preferences and what the patients typical desire is for life sustaining measures.
Karver
Sloan B
SB
Psychosocial and Palliative Care Program, H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL, USA.
Berger
Jessalyn
J
D017051:Hospice Care; D006801:Humans; D009369:Neoplasms; D059408:Pain Management; D010166:Palliative Care; D010348:Patient Care Team; D011209:Power, Psychological; D013727:Terminal Care