by Karen Wyatt MD
When it was time for Doris, an 85-year old woman with biliary cancer, to be discharged from the hospital, her physician suggested to her and her family that she be admitted to hospice care. But Doris refused hospice care even though her family members strongly supported the doctor’s advice.
It’s not unusual for a patient to have concerns about signing on to a hospice for care and for families to get caught up in a struggle as they try to find the best care possible for their loved one. There are many reasons a patient like Doris might say no to hospice and it’s important for care providers and family members to try to understand her feelings. Here are some steps to take if you find yourself dealing with a loved one who refuses hospice care:
Listen without judgment.
Begin by calmly listening to whatever the patient needs to say. Don’t argue or try to persuade her to change her mind—just listen to see what you can learn about her feelings.
Ask why she is not comfortable with hospice.
If she hasn’t told you yet her reasons for saying no, ask her why. But again, don’t argue with her reasoning. Careful listening will help you understand her better and get a glimpse of how she views end-of-life care. She may have misconceptions about hospice or she may have had a traumatic experience with death in the past. Provide her with a safe space to express her feelings even if you don’t agree with them.
Validate her emotions.
Let her know that you understand why a decision to begin hospice care can be frightening and overwhelming. Don’t push or rush her to choose hospice but agree that she has the right to turn it down.
Gently provide reassuring facts.
Once you understand where her resistance is coming from you can gradually begin to provide additional factual information about hospice. Again, don’t argue—just mention some of the details about hospice and how it functions as a way of answering her fears. For example, many people fear that accepting hospice care means that death will come more quickly. In this situation you might explain that a study has shown that patients who receive hospice care actually live longer than patients with an identical diagnosis who do not receive hospice care.
Arrange for her to meet someone from hospice.
Invite a hospice staffer to meet her and answer questions. Connecting with a real person who represents the hospice team can go a long way toward reassuring the patient that hospice care is provided with compassion and empathy as well as expertise. During that face-to-face meeting you can bring up some of your loved one’s questions to show her that you are on her side and share her concerns.
Respect her wishes.
Let your loved one know that she has control over her own decisions and that you will honor her choices. She needs to feel supported or her resistance to hospice might increase if family members apply too much pressure.
Offer alternatives.
If palliative care is available in your area see if she might agree to accept that rather than hospice, since she will be able to continue curative treatments while receiving palliative care. Some patients may also agree to be admitted briefly to a home care service for evaluation of their potential for improvement. This temporary measure could buy some time while your loved one adjusts to the idea of hospice care.
Ultimately no one should be pressured into receiving hospice care if it doesn’t meet her preferences. But most patients who initially refuse care from hospice end up agreeing to it eventually and feeling good about their choice. We must allow patients the freedom to choose their own course with whatever timing is best for them. Showing respect for their right to make decisions for themselves is an important step to help patients embrace their own individual end-of-life process.
