When it’s time to talk about hospice, those living with serious illness, their families, and even their doctors may feel unsure of how to begin. It’s a common situation. A long history of pop culture dramatization, misinformation, and general discomfort with the idea of end-of-life care means when the subject of hospice care does come up, it’s often quickly dismissed or happens far too late.
The truth is, hospice care is a great option for people with a life-limiting illness who want to live as comfortably as possible, with less pain and fewer symptoms, for as long as possible. While many people believe hospice care will make death happen faster, a 2007 study found that those who choose hospice care actually live longer than those who do not.
Hospice care is appropriate when a doctor determines that a person has a life expectancy of six months or less if their disease continues to follow its natural progression. It does not mean that death is days or even weeks away. It simply means a person is now eligible for another type of compassionate care that focuses on maximizing their overall quality of life instead of curing their disease.
Start at the Beginning
Before the topic of hospice is ever brought up, the first step in the conversation is making sure the person receiving care and their family caregivers are fully aware of their condition. Case managers should not assume that an individual knows the extent of their illness or their prognosis when it’s time to talk about hospice. Many times, the individual has no idea their illness has transitioned to the life-limiting stage. Jumping into a conversation about hospice without laying the groundwork can be very disruptive and bring the conversation to an end faster than it started.
Ask; Don’t Tell
The conversation will be much more productive if it is truly a conversation and not an information session. Asking questions about what matters most to them will help to create a safe, comfortable environment and make them more receptive to the guidance you have to offer.
Begin by asking the individual and their family members about their understanding of the person’s condition. Do they know their current diagnosis, prognosis, and what it means? By starting with this baseline, you can meet them where they are and guide the conversation from there. Share this information with them in a gentle way if they are not already aware.
Questions like these can also help guide the conversation:
- What would make your life easier?
- What things are most important to you?
- What are your priorities?
Once you have this information, you can make the hospice recommendation to them. It would sound something like this, “From what I’m hearing, you feel that you need more help in the home and someone to help you manage your medication. I believe you can benefit from hospice care. Have you ever heard about hospice?”
It’s important to keep the conversation person-focused instead of medicine-focused.
Dispel Hospice Myths
When the topic of hospice is introduced, one of the first reactions people have is fear. This not only may be the first time they are wrapping their head around the concept of having a shorter life than they hoped, but they are viewing hospice through the lens of the bits of information they’ve gathered over the years.
Ask them about their concerns and then provide information about what hospice is and isn’t. Here are some common myths.
- “Hospice is only for people who have a few weeks to live.” Hospice is appropriate for anyone whose life expectancy is six months or less if their disease continues to follow its natural progression. Some people spend months in hospice care, enjoying enhanced quality of life and spending time with loved ones.
- “People who choose hospice die faster.” This is a big misconception because many people wait far too long to choose hospice care. Studies have shown that the expert pain and symptom management of hospice, combined with better quality of life and an array of services actually helps many people live longer than those who do not choose hospice. Some people even graduate from hospice care if their condition improves.
- “Hospice is only for people with cancer.” Hospice is appropriate for anyone whose life expectancy is six months or less. While many patients living with cancer choose hospice, it is very helpful for a broad range of diagnoses, including people living with heart disease, ALS, Parkinson’s, kidney disease, and dementia.
- “They’ll make me switch doctors if I choose hospice.” Your doctor will continue to be very involved with your care. Hospice will work closely with her in developing your care plan to make sure you are getting everything you need.
- “They keep you drugged up and out of it when you go into hospice.” While pain management is an important part of hospice care, the care team works to make sure you are experiencing the best quality of life possible, which includes working to ensure you are as present as possible and able to do those things that bring you joy.
- “I can’t afford hospice.” If you have Medicare or Medicaid or if you receive care from the Department of Veteran’s Affairs, hospice is a fully covered benefit for as long as you need it and it is appropriate for your care. The benefit is also covered by many private insurance plans. There is no out-of-pocket expense to the person receiving hospice care, which includes care from experienced professionals, medication, equipment like hospital beds, and supplies to help manage your condition.
You Don’t Have to Have All the Answers
As the conversation progresses, the individual and their family may have questions that you are unable to answer. That’s OK. By making sure the individual and their family feel listened to and cared for, you can then guide them to a hospice professional who will provide additional answers and guide them to the best care decision for the individual.
Your trusted hospice care partner can help by connecting them with an expert who is skilled in helping people navigate their end-of-life care options.
To learn more about when hospice care may be appropriate, visit our Hospice Indicators page.