The conversation doesn’t have to be as difficult as you think.
Contributed by Maura Rhodes, a health journalist based in Montclair, New Jersey, who has written about caregiving throughout all ages and stages of life.
Realizing that your parent or another loved one in your care has reached the point of needing hospice is painful. It means the time has come to make the person comfortable instead of trying to make them better. Broaching the subject of hospice can also be painful, and it can be hard to figure out how to do it. But the conversation itself doesn’t have to be as difficult as you might think.
“Often, the anticipation of having to bring up the possibility of hospice with a loved one is worse than the actual conversation,” says Andrea Devoti, executive vice president of the National Association for Home Care and Hospice.
To help you take a calm and carefully considered approach, Devoti offers this advice.
Know your audience.
Chances are, you’ve known the person a long time — your entire life if they happen to be your parent. This means you have a history of communication and ways of interacting that you know work (or don’t). “It doesn’t have to be a melodramatic conversation,” said Devoti. “Approach your loved one as you always do. If your mother appreciates humor, start there. Take a factual but loving approach if that’s your relationship style.”
Check in first.
Whatever communication style you use, begin the hospice conversation with questions such as, “How are you?” “Are you comfortable?” “Are you happy?” “What would you like to do over the next month?” This lets your loved one know that you have their best interests in mind. The answers you get also will give you cues about how much they understand about their situation.
Choose your words carefully.
This sounds obvious, but what are the right words? Again, the language you use will largely be dictated by the relationship you have with your loved one. However, there are some words you might want to avoid. Ironically, one of those words is “hospice,” which people often equate with imminent death, says Devoti. “I’ve found it’s best to use the term ‘home care company.’ You can then go on to explain what that means. Tell your loved one, ‘Nurses and other qualified people will be coming in to care for you and keep you comfortable.” Steer clear of medical jargon. Avoid phrases like “Based on your prognosis,” for example. Leave it up to doctors or other medical professionals to deliver information about their medical condition.
It may be tempting to take control of your loved one’s care, believing you’re less likely to meet resistance that way. And there may be some people who are happy to relinquish decision-making to someone else. But until you know that for sure, it’s best to ask the person if its OK for you to help.
Know how to respond to denial or anger.
If this is the response you get, don’t take it personally. Your loved one is responding to the situation, not you. “In that case, continue to give support,” says Devoti. “You may have to leave the room and let them calm down. This may be the time to call in the physician to talk to them about options. Some people take denial to the point of wanting to talk to another clinician. If you can, give them that opportunity.”
Be prepared for relief.
Many times, says Devoti, someone who has reached the point of needing hospice care is aware of their situation but afraid to admit it for fear of disappointing the people they’re close to. If it’s clear this is the case with your loved one, reassure them that you aren’t suggesting hospice care because you think they’ve given up but because you want to see them comfortable. Explain that with hospice care they’ll get the right medication and support they need for that to happen.
Keep it simple with dementia.
Depending on the stage of dementia they’re in, they may not understand what hospice care is. When explaining what’s going to happen and preparing them for the appearance of new people, Devoti advises focusing on the benefits. “You might tell them that as part of their medical care they aren’t going have to take medicines that make them feel sick anymore, rather than try to explain that their treatment is no longer working,” she says. Or emphasize that the people who are going to help can keep them free of pain.
Trust the hospice care experts to know what to do.
Remember that the nurses, social workers, aides and others who will be caring for your loved one have been trained to deal with all possible scenarios. They will know, for instance, that a senior with dementia might have stranger anxiety. “They won’t come in the first day all hustle and bustle,” says Devoti. “Instead, they’ll start with an activity the person enjoys, such as looking at pictures, to help them feel comfortable.”
Hospice isn’t about giving up the struggle to live but about maximizing the quality of life in the time that remains and working through the spiritual and emotional challenges that arise near the end, for both patients and their loved ones. Hospice teams also help loved ones through the bereavement process.