Barriers to Hospice Care

We’d all like a good death!

In my last blog, I talked about good deaths and bad deaths and how, as a hospice bereavement counselor, I have to deal with both. Now I want to talk about why I think some people wait too long to call hospice. Waiting too long leads to my idea of a “bad death.” And again, I’m speaking only from my experience in a small, community-based hospice. I can’t speak for other hospices.

As I said before, “I fully understand why people don’t like to call hospice when a loved one is given a terminal diagnosis. Family members don’t want to admit that someone they love is dying. So they want to “try everything,” to get that person well. Which generally means the person is in the hospital, they have a tube in their throat or a feeding tube, they have needles in their arms, they are continually awakened by the nurses monitoring their vitals, they are away from home, away from loved ones and they die in this sterile, rather impersonal environment. I’m not putting down the care they get in hospitals. Thank God for wonderful nurses and doctors! But let’s all be honest, if you could choose where and how to die, like that, or at home surrounded by your loved ones, which would you prefer?”

But first, let me clarify. Your loved one doesn’t have to be actively dying to qualify for hospice services. As long as they need help with more than two daily activities, like making meals and taking medications, and they are uninterested in going to the hospital again, they can ask their doctor to give them a referral. A doctor will consider whether they would be surprised if the person died within 6 months. If the person has heart failure, kidney failure, diabetes, cancer, dementia, or COPD, a doctor will likely be willing to sign, because these things can progress quickly. Getting the referral early allows you and your loved ones to access a great wealth of support, before you really need it.

Barriers to Hospice Care

Here are a few Barriers to Hospice Care that I have heard about:

One of the biggest barriers for hospice care is that people don’t want to sign the “DNR” form. Let’s be clear, you don’t have to sign the “Do Not Resuscitate” form to be on hospice, but you do need to have the discussion. But, if you don’t sign it, you need to know what happens when someone calls 911 on a distressed eighty-year-old. The paramedics come and do CPR. CPR only works if RIBS ARE BREAKING. No one tells you that. Also, they don’t tell you that CPR HARDLY EVER WORKS. Now, if you’re fifty, I can see why you’d want to call. Go ahead, break my ribs if it will help! But if you’re eighty, do you really want your ribs broken when it probably won’t help you live longer? These are important things to consider.

Also, some people have told me they thought that hospice “sped along” people’s death. That is, at least in my state, illegal. We would never do that. Whether or not is ethical is a completely different subject for a different blog. But for now, in Nevada, let me be clear, that is not an option!

Granted, our goal is not necessarily to help people get better, it’s to help people be safe and comfortable, and to die with dignity when the time does come. But yes, sometimes patients’ health improves with consistent care and help, and that is a very happy thing. We are not interested in speeding the dying process. I think this misunderstanding comes because when a person is on hospice, they have access to a “comfort pack.” A comfort pack has pain and anti-anxiety medication in it, like Morphine and Ativan, and laxatives, anti-nausea meds, etc. The goal of the comfort pack is to give the family everything they need for that 3AM-on-a-Sunday crisis. Help! My mom hasn’t pooped in three days! Help! My father has the flu and is really nauseas!

The comfort pack also has medications that help with the predictable, last-days, issues of pain, and anxiety, and trouble breathing. The family is trained how and when to use them, and the nurse will always come help. Trust me: dying can be rough, depending on what you are dying of. Families are extremely grateful for the comfort packs when they are needed. What a relief to help ease the suffering of their loved one so they can rest peacefully. But the comfort pack is not a way to help them move more quickly along. It is merely to make the way along, more comfortable.

We need to think outside the box!

The thing is, we need to start having an honest discussion about these things. In America we have culture that is afraid of death. We avoid thinking or talking about it. Many countries don’t have that luxury. People die all the time, it is part of living that things die. But since we’ve moved away from the farm, we have become unfamiliar with death. We don’t get to see kittens and cows being born. We don’t often live with grandma and great grandma to see the circle of life. Death has become the sterile purview of hospitals.

That needs to change. Hospice is one small way it can happen, but we need some “out of the box” thinking on this topic. As boomers are becoming seniors, the old ways won’t work. Please share any ideas you have about how to make the dying process better. Ask questions, give opinions. As we discuss, we can learn and make better decisions about something as important as death.