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Why it’s never too soon to ask about hospice or palliative care

Jennifer Ebbitt, RN, is working to turn the tide on the way we talk about death and dying and plan for it. In her role as a nurse care navigator for HopeHealth, Jen meets with patients who have a serious illness and their families to provide guidance and support on hospice care. Here she explains why and when a patient should consider asking their provider about hospice and palliative care. You might be surprised to learn the time to ask is sooner than you think.

There’s a common misconception that hospice is only for the last few days or weeks of life. How early should someone start thinking about hospice or palliative care?

For any potentially terminal condition — whether that’s congestive heart failure (CHF) or cancer or a neuromuscular disease — I encourage people to think about their wishes shortly after they receive their diagnosis. If you want to know where you’re headed — and not everybody does — ask your doctor to be frank with you. Ask, “What are my key triggers to watch out for and how will I know that my illness is getting worse?” Once you have a view of the road ahead, you can think about what you would wish for as your condition changes, even if you hope to have a lot of time left.

Learn more about the differences between palliative care and hospice care.

Can someone living with a life-limiting illness ask for a palliative care consultation even if they aren’t ready to start hospice?

Yes, if you’ve been diagnosed with a life-limiting illness and you have questions about your prognosis or symptom management or getting your affairs in order, ask for a palliative support consultation. We’ll record your wishes and goals of care to ensure they are added to your care plan.

Why would someone want to anticipate the symptoms of a final decline? What do you do with that knowledge?

If you know where you’re at in your disease process, you can make informed decisions about what you want and your care. What would make your remaining life meaningful? A hospice or palliative care provider can guide you in what we call a goals-of-care conversation.

What happens in a goals-of-care conversation?

Unlike most medical specialties, hospice and palliative care providers don’t just talk about data and diagnosis. We help you as a patient become a specialist in yourself. We talk about the road ahead, how the disease is likely to progress, ­and what the ultimate end tends to look like. We’ll discuss things you can do to live the life you want for as long as possible — what I call meaningful time. Then you can make decisions. Maybe you’ll decide not to do a new round of chemo because it will make you really sick and not make a big difference with your longevity, and you’d rather feel well enough to enjoy the summer with your grandkids.

“We’ll discuss things you can do to live the life you want for as long as possible — what I call meaningful time. Then you can make decisions.”

What are some of the key signs that a condition is worsening?

Is your illness progressing in spite of treatment and medication and lifestyle modifications, or are there still changes that you can make? That’s an important distinction. If you’re at a point where you can take steps to improve your condition, that’s great. But if you’re still declining despite medical interventions, that tells us we’re transitioning into a later stage or end stage of the disease.

It’s hard to define when the end starts, though, isn’t it?

I think there’s this Hollywood view of a single, dramatic conversation at the end. “I’m sorry, we have no other options for you. It’s time to say goodbye.” But the truth is there are a million different nuances along the way.

Sometimes the decline is slow and gradual. Can you give a typical example?

It may take many years for CHF to get to the terminal stage, but that is where the road leads. Maybe at time of diagnosis you had some swelling in your feet, occasional shortness of breath, fatigue. You were sent home with directions to monitor salt intake and blood pressure, lose weight, exercise, take medications. Over time, you have symptoms that can’t be resolved at home or in the clinic. Maybe last year you were hospitalized twice, and this year it’s four or five times. You have edema that doesn’t go away. Your feet are always swollen or your blood pressure’s always high. You’re always changing meds. Perhaps you don’t have the stamina or hand strength or coordination to cook like you used to. Now you need to sit for an hour before you have the energy to make tea. Basically, things are much more variable. That is a big marker your illness is progressing. Every decline becomes your new baseline.

How does hospice help you achieve meaningful time?

A lot of what we offer is peace of mind. There’s a nurse for supportive guidance, education, crisis control, pain management. If you’re angry or upset you can talk to a chaplain or social worker. We have a 24/7 nurse triage line. Medical equipment gets covered under the hospice benefit. Or maybe you just need a certified nurse assistant to come and curl your hair and do your nails and make you feel special for the day. Whatever you need, we meet you where you’re at.

Hospice and palliative care providers don’t just talk about data and diagnosis. We help you as a patient become a specialist in yourself.

How do the conversations you have with patients and families help achieve meaningful time?

Talking sooner rather than later, making your wishes known, also allows us to celebrate where a family is and say, “Let’s go through this final phase for Dad as he would want it. Let’s make sure he’s comfortable. Let’s get him to a place where we can all be around and share stories.” That’s what meaningful time can be.

Learn more: End of life care: Why hospice doctors ask before they tell.

Do you have questions about hospice or palliative care? Ask us at (844) 671-HOPE or Information@HopeHealthCo.org.

Above photo: HopeHealth Care Navigator Jennifer Ebbitt, RN, helps patients understand that hospice service offers peace of mind as well as crisis control and pain management. 

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