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Grief & Grieving

7 ways to improve your family’s hospice care experience

When treatment and medication are no longer improving the health of a terminally ill patient, doctors may recommend they go into hospice care. At that point, the priority shifts focus to concentrate on the patient’s quality of life in their final months or weeks: physically, mentally, and, in some cases, spiritually.

Some patients will opt to receive hospice in the comfort of their own home, while other patients might prefer it be provided in an assisted living facility or nursing home. It’s all about what environment is most comfortable for the patient and, if they’re unable to make that decision on their own, which option their family thinks is best for them.

But no matter the hospice arrangement, there will be a lot of interaction between the family of the patient and the hospice care team to create a loving, stable environment for your loved one’s last days.

How you communicate with them is paramount in keeping the whole experience as positive and supportive as possible—and these seven tips will help make that happen.

Choose a family spokesperson

Many family members will want to have a say about the care of the ill loved one. But choosing a single spokesperson for the family will make communication easier for the hospice care providers, since being told different things by different members of the family can cause confusion.

So, when it comes to making decisions for your loved one, have a family meeting, then have the spokesperson represent the group.

Be specific in your wants and needs

If your loved one is still able to express their wants and needs to their hospice provider, then that’s one less thing for you to do.

However, if your loved one is no longer in a state that allows them to clearly and coherently be specific about what they need—from an extra pillow, to pain medication, to a chaplain, or even just listening to their favorite song on repeat—the family spokesperson should communicate these needs.

In addition, as your loved one gets closer to the end of their life, you may start to experience fear, anticipatory grief, and even anger. While the hospice care provider isn’t there to be your personal therapist, being honest about these things will give them the opportunity to explain things to you in a way that might help and, if need be, point you in the direction of a mental health professional.

Communicate to the hospice team with respect 

It’s not easy to lose a loved one and especially not easy to watch them die. Because of this, you may find yourself resenting those who aren’t going through the same thing, and might even be short or rude with them.

While an emotional rollercoaster is valid during this difficult time, never disrespect the hospice care workers who are there for your loved one and doing everything in their power to keep them comfortable.

If you do lash out, because you’re only human, apologize immediately. Remember these people work in hospice care because they truly love what they do—and they deserve the utmost respect for it. Watching someone pass away isn’t easy for anyone; these professionals, who have made this their life’s work, should be commended.

Listen to what the experts have to say

Unless you have a medical degree that specializes in the illness your loved one is dying from, it’s best to listen to the experts.

The hospice care team will be in touch with the doctors and nurses who have treated your loved one and, although the situation is terminal, that doesn’t mean these people have given up.

Listen to what these professionals tell you, and share with them changes you’ve noticed, so that you are working as a team.

Don’t be afraid to ask questions

Although hospice care workers are trained to not just help the terminally ill, but communicate with the loved ones of those people, sometimes they use medical jargon that isn’t familiar to everyone.

In these cases, don’t be afraid to ask if they can adjust their language so it’s easier to process. Ask for summaries, potential next steps (if that’s still a possibility), and how you can be a better source of love and positivity for your loved one.

Hospice care workers deal with death far more than the average person and, if you ask, they can help you be more present and mindful for your loved one in their final days.

Be cognizant of others and their needs

The people who are providing hospice care for your loved one are human, too. And, in being human, they can have bad days, become overwhelmed, or just need a mental health break to recharge.

Keep this in mind when you’re interacting with your loved one’s hospice care workers and be cognizant of them possibly having an off day. If that’s the case, give them the day off and have someone else take over.

That’s why there’s usually a team who take turns providing care. It’s the type of profession that, although rewarding in many ways, can cause some serious burnout.

Show your appreciation

The most important tip when communicating with your family member’s hospice care team? Show your appreciation with both words and actions.

Recognizing hard work feels good for everyone. And the more you can tap into love and gratitude during this heart-wrenching process, the better you'll be able to care for your loved one ●

Grief & Grieving

Grief & Grieving

Grief isn’t a feeling. It’s a process. Everyone experiences it differently, and you are the only one who can feel your feelings. But some understanding may help you come to grips with what you are going through.