Death. Dying. End of life care. Comfort care. Hospice. In the face of losing someone that we love whether they are young or old; hearing these words uttered and the paralyzing finality and irrevocability of it all compounds the already difficult circumstances.
These words conjure up an even more poignant sense of loss than just the life soon to end. Potentially patients and their caregivers may feel: loss of a battle, loss of hope, loss of faith, loss of the will to live, or just finally giving up. There is often a sense of guilt between patient and caregiver, feeling that we are giving up on you; or that you are giving up on us. But that is far from the truth. We say these words and discuss these feelings because we care.
Recognizing the global need for improved dialogue around end of life care, Salzburg Global Seminar convened 66 leaders from 14 countries around the topic “Rethinking Care Toward the End of Life.” The highlights from the session on end of life care, co-led by Mayo Clinic and The Dartmouth Institute for Health Policy and Clinical Practice, include a need for increased education and training for medical professionals. The goal is to find a way to have difficult conversations regarding death and smoothing the transition from a more curative notion of health care to an approach driven more by palliative care and quality of life.
Based on discussions at Salzburg Global Seminar, Session 562, an example of some of the important questions regarding end of life that may be helpful for all of us to openly discuss:
- Is dying well as important as living well?
- How have you prepared for your death?
- Will caring for your dying loved one bankrupt you emotionally and financially?
- How and what do you measure to ensure quality palliative and end of life care?
- Doctors, Nurses, do you want to die the way your patients die?
- Do you know how to access palliative care when you need it?
Let’s talk about it.
As medical professionals, as people, these are precisely the conversations that we should be having with patients, yet we struggle to clearly address death with patients and their families. We fail to find out their wishes: how they want to spend their remaining time, what are their goals for today and also for dying. A recent study led by Mayo Clinic physician, Joe Hyder, M.D., found, “Occupations with likely exposure to child development, death/bereavement, and naturalistic influences demonstrated lower [end of life] care intensity. These findings may inform patients and clinicians navigating choices around individual [end of life] care preferences.” Meaning that those that may have more familiarity with death and the dying process would actually choose less invasive medical care towards the end of their life.
These conversations are such complex topics and involve unpacking feelings, knowledge, the unknown, and understanding. Though difficult, we must ask and listen. We must change the dialogue. We have the ability to prepare patients and families for death. We may not always be able to cure you, or save your life, but we can help you die gracefully. We can help your family and friends find the ability to say goodbye, and to prepare for the unthinkable. We can facilitate discussions so that the surviving family can be at peace, knowing that their last words spoken to one another were, “I love you.”
It is indeed cliché, “in death there is sadness,” but there can be beauty and there can be peace. In health care, we have the profound opportunity to help others find that peace before it’s too late.