In this political season*, I recall President John Kennedy’s familiar, famous line from his inaugural: “Ask not what your country can do for you, ask what you can do for your country.”
What about this version:
Ask not what your hospice can do for you, but ask what you can do for your hospice.
Now, wait just a New York minute . . .
Isn’t hospice supposed to do it all for you, as patient, as caregiver? Most hospice patients have spent a lifetime paying for Medicare. The nurses and other support staff on the hospice “team” are paid for, right? The medications for the terminal illness are covered in the hospice benefit, right? The equipment brought to your home—hospital-style bed, commode, oxygen, and more—are part of the deal, right?
Why should a caregiver or patient ask, What can I do for hospice?
What a crock!
Now that I’ve irked you, let me try to explain by briefly focusing on my ABCs of hospice care.
A) Before Hospice Care
1) Learn about hospice care.
Years before anyone is facing a serious illness, be alert to what hospice care means. Ask your doctor. If you have a formal or informal discussion with a loved one about what they want when nearing death, why not include hospice in that conversation? Do some low-key research. If you have a friend or family member that used a hospice, gently ask about their experiences. Yes, what hospice care represents may be intimidating, but information can reduce the fears.
2) Strap on a figurative seatbelt, and stay open-minded about what the doctors say.
If you or a loved one has a serious illness, one that could become life-limiting, most doctors will share about treatment options focused on cure and recovery. Getting better. Returning to normal. However, the options may include palliative care or hospice care. Those are not about “cure,” but “comfort care.” Be open-minded. Let your doctor explain the hard stuff. Be aware some physicians will be uncomfortable with comfort care. It’s not their expertise or it means they have “failed.” I encourage you to encourage them to talk about everything.
3) View hospice as a living option (not a dead end).
For you, what is the difference between quantity-of-days vs. quality-of-life? Though difficult for many to admit, we all die. The benefits of more chemo or another surgery can become physically costly to the body and to quality-of-life. What is most important to you: more or better days?**
B) During Hospice Care
1) Remember what is said about “assume.”
Even if you are a wonderfully polite person, you have likely heard the old trope of . . . to assume makes an ass out of “u” and me. Here are two assumptions that can be unsettling:
- Hospice will take over all of the care of the patient. Not true. The hospice team will support you, but it’s up to the patient’s family and friends (and/or privately hired caregivers) to provide 24/7 support.
- Any medical equipment you want will be available. Not true. For example, a family may prefer their loved one has a special bed with a high-tech mattress. The hospice benefit will probably not cover that “extra” expense.
Hospice care is an overwhelming and arduous time. You won’t comprehend everything that is said. The pamphlets explaining hospice will be tossed on the dining room table with a pile of other ignored “important” papers. Your eyes will blur as you scan online material. Try to avoid making assumptions, instead it’s important to . . .
2) Ask. And then ask again.
The hospice team is there to help. Ask them questions. If a social worker or home health aid is visiting and you have a medical question, they will try to get you an answer from the right person. Hey, they know all the phone numbers! Ask. Ask. Ask. You will forget or misunderstand some things. Hospice is available 24/7 by phone. Call and . . . ask.
3) Do it today.
What I quickly learned as a hospice chaplain was that “today” is the only day. Yes, I would schedule appointments into the future. But I soon understood that an anguished caregiver or a dying patient needed me to be available “now.” Don’t delay a conversation with a dying loved one. Don’t put off a visit with a dying loved one. When someone has “six months or less to live,” they may they live much longer. Or not! No one can predict the “when.” Living in the “now” is exhausting, but—as already mentioned—please don’t assume you have a tomorrow.
C. After Hospice Care
1) Don’t be that horse.
Every reputable hospice must have grief support for families and friends. Some of those resources are minimal, some extensive. They will be directly offered to grievers in person, by mail, or through a phone call. But no one in hospice “forces” anyone to take advantage of grief groups, counseling, or workshops. As someone who spent years working in grief support, I am so aware of the many that never took advantage of what our hospice offered.
Take advantage! Even during this pandemic, there will be ways for you to get questions answered, or to share concerns with a counselor, or to find that others in a group also struggle with sleeping/eating/concentration. There’s the old adage: you can lead a horse to water, but you can’t make it drink. Don’t be that horse!
Every reputable hospice will have opportunities for volunteering. Most agencies probably won’t want you to volunteer until a year after the death. Again, no one will hunt you down or hound you about volunteering. However, whether it is helping with fund raising events or visiting patients (right now, probably on Zoom), you may have a skill/passion/interest that matches a hospice’s need.
3) Tell others about your experiences.
This completes a circle. At the beginning, in the Before Hospice section, I mentioned how important it was to learn about hospice before hospice was needed. You have now become someone who can provide information about your particular experience with a particular hospice. Which is to say that whether your time with hospice was high or low on a scale of “approval,” you can add to friends’ and family members’ understanding when they are considering what to do when loved ones has been told they have six months or left to live.
I hope hospice patients and the families/friends caring for them have a positive experience with the ABCs I’ve mentioned. No hospice agency can guarantee that everything for everyone works out in the best way. However, it will help the care for a patient when there are fewer assumptions, more questions, and to follow President’s Kennedy’s always relevant challenge: what can I do?
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
*Although our “political season” seems never-ending these days!
**There is research suggesting that entering hospice care earlier rather than later adds to your quality-of-days. Here is just one example found after a few seconds of searching: “In 2007, a study was published by the Journal of Pain and Symptom Management that hospice care may prolong the lives of terminally ill patients . . .”by