Empowering your patient to be the ultimate decision maker about all things related to the end of their life is fulfilling and meaningful for both of you.
Instead of using the term, “palliative care,” with my patients, I call it “quality of life preservation” or “quality of life restoration,” because palliative care isn’t just for pain control, it’s also symptom management to enable a patient to focus on her own goals, as well as helping her to find moments of joy.
Whenever possible, I help patients to fulfill life goals and dreams in alternative ways. For example, if my patient wants to attend her grandson’s high school graduation 200 miles away, we may need to consider bumping up medications in order for her to feel well enough to attend. If her son is 10 and one of her life dreams was to see her get married one day, I help my patient to find a wedding card to leave for her child’s wedding day.
I once had a 24-year-old daughter contact me to tell me how important her mom’s cards were to her. Her mother died when the daughter was seven and her mother had left her cards for every milestone—getting her driver’s license, graduating from high school and college, cards of encouragement when life was especially challenging, a card for when she her first boyfriend broke up with her, and a card for before her wedding. Her mother wrote, “Marriage advice—don’t ever go to bed angry with one another because whatever it is can be talked through. And finally—when your dad lifts your veil to kiss your left cheek you will feel me kiss your right.” The daughter told me that she felt her mother’s kiss and has always felt her mother’s presence through these cards. She asked if I remembered if the wedding card was the last her mother had written, I told her that her mom left a letter for her first pregnancy and for when her first child was born. And there is a voice recording of her mom reading nursery rhymes and children’s stories so the daughter’s children will know their grandmother’s voice.
I sometimes must explain to patients that it’s time to regain control of their life and stop treatments so they can have more time with family and spend that time away from medical buildings. I help them fulfill the elements needed to experience a peaceful death. Here’s a few things I’ve learned along the way that you may want to consider.
1. Help your patient reflect on their life purpose and acknowledge/realize that this was valued by at least one other person.
2. Encourage your patient to identify the legacy they are leaving behind for others (not monetary.)
3. Help your patient die with dignity in the environment of their choosing.
4. Ensure they are free of pain.
5. Do whatever you can to help patients navigate systems so that they don’t leave financial debt for family to pay associated with medical treatment.
6. Assist your patient in connecting with a lawyer and/or a finance professional to make a plan to have all legal and financial affairs in order, including how to avoid passing on medical debt.
7. Connect them with a mental health professional if they’re One thing my patients struggle with is feeling confident they will be spoken of fondly after they’re gone.
8. Connect them with a chaplain if they want to help them feel spiritually connected to a higher power. This could also include work around giving and receiving forgiveness from others.
In some ways, my patient won her battle. She became an advocate for herself and determined how she wanted to handle this medical crisis on her terms. She let me empower her with information so that she was able to participate confidently in making decisions about each step along her cancer experience. Because she was able to call the shots, she knew she was in control of her situation. She won because she became and remained in charge through the end.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.