When Your Loved One Refuses Hospice Support
A gentleman named Oscar* lived with kidney disease and prostate cancer for years. He was now on dialysis, which meant he had to get transportation to and from the dialysis center three times a week. Oscar lived independently, but it was getting messy. His failing health was making it difficult for him to live well at home: his house was a disaster, bills did not get paid, the fridge was full of expired food, and he had lost 30 pounds in the last 6 months. Weakness and fatigue were constant companions.
His latest Emergency Department visit became a hospitalization, and during this stay his doctor recommended hospice.
I came to chat with Oscar and his adult children about hospice care. As I looked over his chart before the meeting, I thought, “Oh, this guy is definitely appropriate for hospice based on his kidney function. He will be so relieved to have the extra support.” I explained to the family and Oscar about hospice services – weekly nurse visits, symptom management, more support for the family, 24/7 access to hospice triage nurses, and emergency visits anytime (even at 3 a.m.).
Oscar was angry during my little speech.
He said, “Listen, I have been living for years this way. I like going to the dialysis center. The nurses are like family to me. I am not ready to give that up.” Oscar’s family was visibly frustrated but could not convince him any other way.
“I'm done now, thank you for coming,” he concluded.
“Autonomy is a multidimensional ethical concept. It is the right of a capable person to decide their own course of action based on personal values and goals of life. Self-determination is a legal right.”
HPNA definition of autonomy
Oscar refused hospice even though he was visibly declining and his home life was in shambles.
This happens all the time. Even if the family and medical professionals believe that hospice support is the “best” option, the patient may still refuse hospice services. In that moment, hospice may not align with the patient’s values, priorities, beliefs, or emotions.
Some patients value independence and privacy over accepting help. Some patients may value fighting their disease process to the end. And some patients may never accept that they are eventually going to die, and they may never ever agree to hospice support.
Patient autonomy is the right to make your own decisions about your health, your life, and your death.
Physicians do not recommend hospice unless your loved one meets strict criteria for hospice. The patient must have a legitimate hospice diagnosis and must be showing signs of decline despite treatment.
Here are some things you can do to support your loved one if they refuse hospice at this time.
Take a breath, and honor the patient’s decision.
Talk to the doctor who referred your loved one to hospice and inquire about available resources. You likely need help from a social worker, case manager, or patient navigator.
It is possible that the next health crisis may not be pretty, and it can be helpful to prepare yourself for this possibility. The patient may have a fall or may continue to decline because they cannot prepare their food, or may frequently call 911 and go to the Emergency Room. It happens all the time. Our support services in the US are inadequate for humans who need help as they age or decline or are suffering from chronic illness. Period.
If the patient has received a “hospice referral,” encourage them to have a meeting with the hospice team even though they are not ready for hospice care:
“Dad, you don't have to sign up today—let’s just gather some information for the future.”
A nurse will describe what hospice is and how they can support the patient and the family at this time. They are very informative and will give the patient an opportunity to ask more questions (getting to know the “devil you don't know”). For the future, once the patient is in their system with the doctor's referral, the hospice program can easily do an emergency hospice admission if needed. Not ideal, but again, happens all the time.
You may also consider a palliative care consultation. If they meet the criteria for hospice, they would benefit from palliative care support. This is an excellent transitional resource for the patient and the family. Here is my blog post that differentiates hospice and palliative care.
If the doctor recommended hospice, the patient likely needs some additional help at home. Look at your loved one’s physical abilities to discern where the gaps are right now. Are they able to safely walk independently, get in and out of the shower, and manage the cleaning of their home? Do they have stairs? Are they able to go to the bathroom without assistance? (Most patients have no problem getting ON the toilet, but often cannot get OFF without assistance.) Can they do their own laundry? What kind of assistance do they need to keep them safe in their home?
Are they able to safely manage their medications and symptoms? A social worker and I once visited a hospice patient who could not even get out of her chair to find her inhalers, she was so short of breath. When we landed, we quickly made her some scrambled eggs, brought her water, and watched her energy and mental clarity return. Managing your own medications can get confusing when you are fatigued and weak. I have too many stories about patients living independently and taking the wrong medications, overdoing it on opioids, or getting confused about their meds.
What about groceries, meals, food intake? Consider meal drop-off (e.g., Meals on Wheels, church support, friend support).
Consider alternative living situations (e.g., foster home, room and board, nursing home). Consider living with them, or bringing them to your home to live with you.
Consider hiring help with cleaning, laundry, food.
Consider hiring private caregiving services (to help with medications and overall hygiene).
Consider filling the weekly med containers for them.
Many families are frustrated when their loved one is not agreeable to hospice because they know that more care and eyes on the patient could mean a better quality of life in general. However, zooming out a bit and considering the patient’s experience, fears, and/or values may help you take a breath and give this situation a little space while considering more options to help your loved one in this moment. Confronting one's imminent mortality, physical decline, and disease process is not an easy task. Your loved one may just need some time to let this big news settle in.
*Oscar is not an actual patient. This story is based on many patients over multiple years.