Former President Jimmy Carter’s recent decision to enter hospice care spurred a national conversation about end-of-life issues—the kind of conversation more of us should be having with our doctors, according to one expert.
When to start the hospice care conversation
Both doctors and patients tend to avoid subjects like hospice care and palliative care, and that’s a problem says University of Rochester Medical Center researcher Marsha Wittink, MD. Wittink co-authored a recent article describing how unfounded optimism about the effectiveness of medical treatment and physicians' own emotions can delay such conversations.
Physicians, Wittink explains, tend to follow the patient’s lead. "They will assume you want everything done if you don’t let your doctor know that you want to focus on quality instead of quantity of life.”
But Wittink and her colleagues believe physicians will adjust when patients and families talk about their end-of-life wishes.
Having the discussion “doesn’t mean you’re going to stop treatment—either now or years from now,” Wittink said. “It just means making sure your doctor and your family know what you want, whether that’s every possible treatment, or an emphasis on comfort and quality of life instead of intensive and often uncomfortable interventions. It ensures that your care team will pay attention to what matters most to you.”
Talking about hospice care and palliative care
Below, Wittink answers some questions about palliative care and hospice care, and about the kind of discussions she hopes you’ll have with your doctor.
Palliative are isn’t just for patients nearing the end of their lives. It’s an approach to care that helps seriously ill patients feel better and live better. Hospice care is more focused on end-of-life, and it emphasizes comfort and quality of life for those in their final months or days.
When should you talk about palliative care and hospice care with your doctor?
There is no bad time. You don’t have to wait until you’re facing a serious illness. But if you are facing a chronic condition that’s newly diagnosed or worsening, take a few minutes to talk to your doctor about what you want to prioritize during the rest of your life, or even over the next few weeks. If you don’t have the conversation, your doctor will likely assume you want every possible treatment and proceed accordingly.
How can I start the palliative care conversation? It feels awkward.
We all have some degree of fear when it comes to end-of-life issues, but it can be a beautiful thing when it’s discussed openly. You can simply say, ‘I’ve been thinking a lot about what’s most important and how I want to spend my time. Here are my thoughts. How can my care team help make them possible?’
What questions should I ask my doctor if I am being treated for a serious or chronic illness?
Possible questions include;
- What are the possible benefits and risks of this treatment?
- How much longer do you think I will be able to do the things I enjoy if I chose to pursue treatment and if I don’t?
- What are the benefits of this treatment, and what are the chances I will see them?
- What are the side effects or drawbacks, and what are the chances I will experience them?
Questions like these are simple but they can open the way to further discussion, help you to fully understand what you are facing, and crystalize your wishes. They can also help your care team to understand your values, to see you as an individual, and correct any assumptions they may have made about what you want.