I ran into an old friend last week. His mother died 15 months ago, but he was still haunted by the fear that he had done something wrong by not arranging for her to receive the Last Rites of the Catholic Church.
He was trying to honor her wish, expressed many years before her final illness. But family members are frequently torn between what they believe to be their loved ones’ wishes and – in the days and hours before and after death, in the midst of terrible emotional turmoil – what is the right thing to do.
Today, this conflict is exacerbated by families and providers all-too-often avoiding the hard conversations that need to take place if a patient’s wishes are to be thoroughly understood and if the care offered by providers is to align with what the patient and their family really wants. Advance end-of-life planning can spare patients unwanted, aggressive treatments and it can help physicians calibrate care in more reasonable manner.
However, the conversations that provide the foundation for effective end-of-life plans are difficult for everyone.
Caregivers have been trained to view death as the ultimate enemy, to be fought with all the weapons at their command – and those weapons get better every day. For many doctors, discussing death with patients and their families can sound like surrender. Relying on their training, and retreating behind the protective ethical walls of their profession, doctors often pursue treatments they know to be futile, or of little value, rather than sit down with the patient and family to raise issues related to the inevitable. Consequently, beyond the simple DNR order that almost all LTC facilities require incoming patients to address (a document that is effectively trumped by any care directive a family-member gives in a clinical setting), a rich conversation is rarely conducted addressing the patients’ wishes and options with physicians, other care team members, and family members all participating.
Therefore, as families frequently don’t know what questions to ask, are unfamiliar with their options, and are wrestling with grief, guilt, and fear, it is up to care-giving facilities – hospitals, hospice, or LTC – to make sure that these conversations take place in a consistent, repeatable, and structured way. Indeed, having a written process for end-of-life planning makes the conversation so much easier to have.
If rich, end-of-life Advance Care Planning conversations are conducted, and documented, early enough so that patients can be fully informed and engaged, a recent Dartmouth-Atlas study has shown that they tend to take greater advantage of palliative and hospice care, and avoid the more aggressive interventions associated with what the Atlas-Dartmouth study termed “poor quality of life and death, as well as higher costs and, in some case, reduced survival.”
And when a patient’s true wishes are explored, aired, and documented in the presence of providers and family members, death arrives with less confusion and uncertainty about what the patient wants, and what’s the right thing to do. That spares physicians the job of attempting to do the impossible, and can help spare survivors some portion of the guilt with which my friend is still wrestling.
Kerry Shannon is the senior managing director, Health Solutions, at FTI Consulting.