No matter what your politics are in the world today, we can all recognize that the Universe has lost a graceful, honest and strong woman this month of April, 2018. Barbara Bush not only left a long legacy of being the First Lady, mother of a president, advocating for improved childhood and adult literacy but her last act may have a long lasting impact on how people choose to not only live their lives but also how they die. Mrs. Bush chose a dignified, comfortable death on her own terms without aggressive measures during her last stage of life. Mrs. Bush chose comfort measures rather than another hospitalization or ICU admission. Comfort measures, what does this mean? Comfort measures is an approach to patient care which focuses on symptom management while avoiding aggressive, disease specific treatment. The goal of comfort care is to allow the patient to have a better quality end of life with a natural death not prolonged by artificial means.
When a person is nearing the end of their life, they, as well as their care team and family, may be struggling with that most difficult question, “when is enough, enough?” This is where open and honest discussions that are ongoing from diagnosis throughout treatment can make all the difference. Discussing all options, True Consent, needs to be a conversation that specialists and primary care providers have at every visit with their patients diagnosed with life-limiting illness. These discussions may initially be difficult but if you start early in the diagnosis, these conversations can become welcoming, empowering and natural.
How do you start these conversations? An excellent start is asking your patient who was just told that they have a likely terminal illness, “what is your greatest fear?” They may tell you that death is their greatest fear but much of the time, this is not what I hear. The more common responses are fears of pain, nausea, not being able to eat and most commonly is the fear of leaving loved ones, what will be missed, that wedding or baby being born or that graduation. Opening the door to discussing these fears which started the moment you delivered the bad news allows that person to work through the emotions which could plague their treatments. If you do not address these fears early on, they can transform into anxiety, depression, uncontrollable pain and “non-compliance.” Allowing the patient and their family to address these fears early and often can make the journey moving forward a rewarding and beneficial partnership not only for the patient and family but also for the clinicians. Allowing people to face these fears gives them permission to make those difficult decisions early, plan for the end of their life, adjust family events and bucket lists and start to develop goals of care.
Once goal setting happens, the patient-family team feels empowered and have more energy to focus on healing and living. The providers and treatment team, surprisingly, also benefit from this care planning and goal setting because it takes failure out of the discussion and rather allows the focus of treatment to be on allowing the patient and family to work toward life goals and to face these fears together. Sharing some of these fears together in an open and honest communication freeway (the provider worries they may not be able to treat this disease to the point of cure or that the treatment might cause more harm than good) opens up new doors to a partnership in the treatment plan moving forward; the gift of “True Consent.” By having true consent, there are no longer winners and losers, failures and successes but rather moments which will come and be dealt with on a day by day basis. Taking each day as they come with a plan in mind of the worst and best case scenarios already considered allows for relief, oscillating goals and planning for the future. Instead of focusing on the 1-2% chance of cure, you can focus on the goal of quality for as long as possible and prognosis becomes a time range rather than trying to come up with a specific time (using weeks to months or months to years rather than saying, “on average people live 6 months with this diagnosis.”)
I do understand that the hospice and palliative community would have preferred that hospice be involved in Mrs. Bush’s end-of-life plan but none of us were there at her goal setting and plans of care. It may be that she had hired private hospice caregivers to allow her to have comfort measures on her own terms or she may have had a personal desire to die with specific people present with whom she had worked for many years. It is really none of our business what decisions she made. She chose to allow the information about her decision on comfort measures to be shared with the world. None of us were there for that discussion but we can all appreciate the fact that she made it very clear she was going live the end of her life the way that she lived all of her life, independently, on her own terms and with great strength and grace.
We all need to thank Barbara Bush for what she has done for palliative medicine. Her graceful death, while choosing comfort measures, will have a positive impact on health care and all of our lives for years to come and may help us reframe the conversations we all have or need to have with our patients.