It’s never an easy conversation to have with a loved one or a patient, “How do you want to embrace the final period in your life?” One of the best examples on how to improve the conversation comes from Atul Gawande’s best-selling book, Being Mortal: Medicine and What Matters in the End. Atul Gawande, critically acclaimed author and practicing surgeon at Brigham and Women’s Hospital in Boston, sums it up best by saying, “We’ve been wrong about what our job is in medicine… We think it is to ensure health and survival. But really… it is to enable well being. And well-being is about the reasons one wishes to be alive.”
In his book, Gawande examines how we as doctors, health care providers, family members, and individuals, have left the reservation when it comes to having an honest conversation about dealing with end of life discussions. Often, the conversation comes a little too late when the terminally ill patient no longer has the opportunity to spend quality time with their loved ones or to live his or her final chapter in their lives where and how they would like. Dr. Gawande has encountered these problems not only in his own profession but in his own family as well. Mom, Dad, and Atul were all doctors, yet they all found it profoundly difficult to talk about end of life decisions with his Dad who was dying at the time until it was almost too late.
In a recent Brigham and Women’s study, featured in The Boston Globe, Doctors Play a Pivotal Role Determining End of Life Decisions, 200,000 patient records were examined to discover that doctors have a hesitancy to talk about hospice. “The nation’s Medicare bill in 2011 for patients’ last six months of life accounted for more than a quarter of the spending that year in the federal health insurance program for older Americans. “ (Medicare NewsGroup, a news group that focuses on Medicare). This dirty little secret is contributing to soaring health care costs as well as derailing what could be some of the most meaningful times in one’s life. The good news is that since 2012, Massachusetts has required physicians to take a course in end of life care as a condition for renewing their license. (The Boston Globe, “Doctors Play a Pivotal Role…”).
So, how can we improve upon having the tough conversation on helping others live out their final days according to their wishes? And why is such a poignant subject matter so alarmingly difficult to have? One of the difficulties may be found in how doctors are trained. They are trained to fight mentally in med school and never give up. It feels like a failure to surgeons not to fix someone; therefore some surgeons may regard death as a failure. Many would argue that the human condition itself has survival etched in its own DNA… to have hope, to believe in miracles, to be the one of the 5% that beats a terminal illness. Yet, as Gawande points out, “There are unfixables like aging and dying.” We all need to help lead the way to encourage and advocate on behalf of what one wants in their final time ahead.
Further insights can be found in Gawande’s interview on Frontline, where we get to eavesdrop on the personal experiences of a brain surgeon, selected terminally ill patients and their caregivers, a palliative care doctor, and Atul Gawande and his parents.
Here are 10 tips on how to improve upon the conversation:
- Start having the discussions early
- Be a good listener; talking doesn’t mean having all of the answers
- Discuss best and worst case scenarios
- Give hope but not unrealistic expectations
- Ask what their understanding is of their disease? (Dr. Kathy Selvaggi, Palliative Care Doctor at Brigham & Women’s Hospital)
- Patients don’t always hear what their doctor is saying. Information must be given in small doses and repeated with subsequent visits
- Talk about fears, priorities, sacrifices, and what you, as the patient, are not willing to sacrifice
- Try to make the best use of the time you have
- Be clear about priorities, “What matters to you in the end?”
- Be clear about your wishes for the very end and beyond the very end
Finally, the interviewees suggest that in the end, it is important to feel like a person and not a patient. That to have the opportunity to die with as much autonomy, dignity and joy as one can muster can make the last years meaningful. There is much to be gleaned from Atul Gawande’s powerful research in Being Mortal, by teaching us how to have one of the most difficult conversations that any of us will ever have to have. In the sage words of Andy Rooney, former iconic radio and television writer, “I’ve learned that the best classroom in the world is at the feet of an elderly person.”