This is a very good article that discusses the importance of physicians having the much needed discussion about end of life with their patients.
“There is no ‘right’ answer for how patients should respond to a terminal illness. It’s a deeply personal decision based on a complex array of spiritual, social, financial and emotional needs.”
Patients who are terminal can only make these tough choices if their doctor (s) are trained and able to share bad news. Yet many doctors receive zero training on how to have these hard conversations and less than a third of primary care physicians receive instruction in end-of-life treatment.
Fortunately, some medical schools have noticed this training gap and are evolving their curricula to fill it. Stanford’s medical school orientation now includes a discussion of the ethics of death. George Washington University Medical School offers a full course about dying.
Johns Hopkins goes a step further and actually assigns students to write instructions for their own end-of-life care, an exercise that forces them to confront the difficult decisions terminal patients face.
That to me is interesting as what better way to have a discussion about a taboo or fearful topic is to think about and write out what you would do or choose.
In my head I have had this conversation with myself many times and I think I know what I would choose if I was ever in that situation of being diagnosed with a terminal illness. Not long ago a friend and I were talking about a person who was diagnosed with breast cancer. We each had different reactions to this news and answers as to what we would do regarding treatment.
For me, depending on if it was localized (1 spot) or not; meaning it had spread-I would seek the least invasive treatment. Chemo to me is a last choice and only if it has a good chance of making a difference. From what I have been exposed to both personally and professionally-chemo has a negative effect on the person and causes other health issues along with destroying all the good things about you physically. It is poison!
I would seek a healthy diet, exercise, alternative therapies to assist with symptoms and pain, and would want to spend as much quality time as possible with my family and friends vs. in a hospital receiving chemo and being sick daily afterwards. Where is the quality of life in that? But this is me and my choice. Others may and have chosen differently. That is what makes us unique. This is why the medical team from the physician to the nurse to the social worker and other medical personnel need to be trained to have discussions about the disease, illness, treatment options and be prepared to talk honestly. Do not sugar coat the diagnosis, but provide me with all the options and possible side effects or reactions to each treatment choice.
And honestly, unless we are going through this ourselves-we can listen, discuss all the options, be empathic and supportive, but ultimately it should be the patient who makes the decision regarding treatment or not; and medical staff and personnel need to accept this.
-Victoria Brewster
Julie Saeger Nierenberg is a freelance writer and editor, lifelong educator and artist, a proud parent and "grand-partner." Julie lives in Canada. Inspired by the experience of her father’s dying and death, Julie published a short memoir about her family’s grief and loss. Daddy, this is it. Being-with My Dying Dad launched a true journey of connection and transformation, as Julie reached out to share it with those who assist the dying and bereaved. Following that memoir's publication, Julie received numerous end-of-life perspectives from others, some of which are available in Journey's End: Death, Dying and the End of Life. Writing and publishing in this heart-led direction, Julie hopes to contribute to a cultural shift in how we prepare and support others in the final chapter of life. Julie also enjoys writing and editing legacy writing, fiction and nonfiction works; she feels privileged to help other writers succeed.