Talk to your parent now about hospice

How do you know whether your parent needs hospice? How do you talk to them about it?

Five years before my dad died, he was accepted into hospice care. At the time, I was thrilled. I was so desperate for help. My dad seemed to be getting weaker by the day. Every time I came over, there were dishes in the sink, food rotting in the bottom of the fridge. The apartment smelled like urine. He was barely showering.

I texted my friends, Kelly and Mary, and used all the exclamation marks. “My dad is getting hospice!!!!!!” If the neighbors heard me shouting, they would have thought the Steelers had won the Super Bowl.

I wasn’t happy that my dad was judged to have under six months to live—I was relieved that he would get access to a social worker, more support being at home, and a hospital bed for the living room.

When your parent is sick, at some point a doctor may suggest it’s time for hospice. You can also ask at an appointment: “Is it time to think about hospice?” But when I made the choice for my dad to enter hospice care, I didn’t fully understand what it was.

What is hospice?

“Hospice” is a general term. It’s a type of care. You can play “hospice” in Scrabble; it’s not a proper noun. The modern hospice movement bloomed from seeds planted in the 1950s and 1960s, as researchers called attention to the mechanical, impersonal American approach to handling (avoiding) death and largely ignoring the dying.

To be eligible for hospice, your parent must be evaluated by a doctor. The doctor attests that, given the current course of their condition, they estimate your parent has less than six months left to live. Medicare will pay for hospice care, but only when your parent has less than six months left to live, according to a doctor’s estimation.

During hospice care, your parent will no longer receive curative treatment for their diseases. For a cancer patient, this would mean no more radiation or chemotherapy, but could still mean a feeding tube, pain medication, or physical therapy. Hospice helps manage pain and discomfort but doesn’t try to cure the disease causing the pain and discomfort.

You’ve probably heard of the “Five Stages” of death: denial, anger, bargaining, depression, and acceptance. Elisabeth Kübler-Ross introduced these five stages of coping with death in her groundbreaking book, “On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families,” published in 1969. Her book, and the research on which it’s based, is often cited as not only the impetus for a more humane treatment of dying but also the birth of the modern hospice movement. The specific “five stages” and whether patients progress through them linearly is a source of conflict in research circles, but it’s important to acknowledge this work’s place in history.

Arguing for the acceptance of death and the compassionate treatment of the dying, Kubler-Ross says: ​​

“Perhaps we have to come back to the individual human being and start from scratch, to attempt to conceive our own death and learn to face this tragic but inevitable happening with less irrationality and fear.”

It might feel like hospice has been around forever, but hospice as we know it is relatively new. The first American hospice center, Connecticut Hospice, was founded in 1974, heavily influenced by Kubler-Ross’s research. It began as a small organization providing in-home care and opened its doors to patients in 1980.

When it first began, hospice care was almost always provided by nonprofit organizations, mostly because the American medical system requires that someone foot the bill. Recently, private equity firms have started buying nonprofit hospices and turning them into for-profit businesses.

From Kaiser Health News:

“With limited oversight and generous payment, the industry is at high risk for exploitation. Agencies are paid a daily rate for each patient — this year, about $200 — which encourages for-profit hospices to limit spending to boost their bottom lines. For-profit hospices tend to hire fewer employees than nonprofits and expect them to see more patients.”

Hospices, especially for-profit companies, are likely to hire licensed practical nurses (LPNs) instead of registered nurses (RNs), and to overload their schedule with back-to-back half-hour appointments throughout the day, such that they are unable to spend very long with each patient. This was my experience. The nurses were in and out, often recommending things we could get (a hospital bed, a bedpan, aquaphor, etc.) that would not require a nurse to administer.

Generally, an LPN can attend to your parent’s basic comfort (change bandages, change diapers, etc.), collect data (take temperature and blood pressure), and sometimes administer medications. It takes about a year of schooling to become an LPN.

Is it hospice or palliative care?

All hospice care is palliative, but not all palliative care is hospice care. You can receive palliative care at any stage of an illness—not just at the end of life. This just means you are receiving care for the discomfort, pain, and stress caused by the symptoms of the illness, and you can receive that regardless of whether you’re receiving curative treatments.

After some time in hospice care, it became clear to me that my dad needed to go to the hospital. His leg was swollen and a small cut wept and bled. He was fatigued to the point of not being able to stand independently.

I didn’t understand that when you put your parent in hospice care, this is covered by original Medicare, even if you are enrolled in a Medicare Advantage plan, but that curative treatment for the terminal condition is no longer covered at all. So, in our situation, heart disease was my dad’s terminal condition. Because we were enrolled in hospice care, Medicare Advantage would not cover a hospital stay if it was related to heart disease.

The reason that hospice is able to provide things like a nurse every few days, a hospital bed, and oxygen tanks, is that they are not providing things like hospital stays. They are not paying to save your parent’s life.

But I couldn’t just watch an infection take hold of my dad’s leg and kill him, so into the hospital he went anyway.

A cardiologist diagnosed him with congestive heart failure and identified that, while it was progressing, it might be effectively managed with a pacemaker and medication.

Hospice doesn’t cover weeks-long hospital stays and multiple consults with cardiologists. It doesn’t cover the placement of a pacemaker.

Those things led to us getting almost six more years with my dad and over $300,000 in medical debt that, of course, we could never repay.

I wish I had known exactly what hospice was and that there might have been other options for my dad that would have been a better fit, but I don’t say all this to scare you away from using hospice care. It’s an essential part of our medical system and helps a lot of people have better deaths. It’s just important to fully understand what it is before you commit to it.

My mom’s best friend entered hospice care when she stopped eating and responding to conversation. Entering hospice care allowed her to stay out of hospitals and rehab centers (which weren’t helping her anyway) and to be home, where no beeping machines startled her and no nurses poked or prodded her unnecessarily. The hospice nurses also helped my mom’s best friend’s son get access to morphine to make her death less painful. Engaging hospice was right for their situation. It might be right for your parent’s situation, too.

Even if hospice is not currently on the table for your parent, you should still bring it up in conversation when possible to see how they feel about it. Do you know someone who has gone into hospice care or received palliative care? Consider asking your parent whether they’ve thought about the circumstances under which they’d want to enter into hospice care themselves. Having a “what if” conversation can make it easier to discuss, and starting before your parent is even sick can make it easier, as most people are more comfortable talking in hypotheticals. “In the future, what would it take for you to want to enter hospice care? Have you thought about treatments you definitely do not want?”

Before you enroll your parent in hospice care:

• Make a list of needs that you think hospice will help you address, and discuss these with your parent’s doctor. If your parent needs a wheelchair or hospital bed, what other options are available for obtaining these? Are those options a better fit?

• Make a list of the current treatments your parent is receiving and address these with your parent’s doctor as you discuss possibly transitioning to hospice. Will these treatments be able to continue under hospice care? What is the consequence of stopping any of the treatments if not?

• It’s possible your parent needs more help managing symptoms and pain but aren’t near the end of their life. They may need palliative care, not necessarily hospice. If your parent is struggling with the symptoms of an illness but aren’t near the end of their life, you can ask their doctor about palliative care.

• Reach out to your support groups, if you are part of any, and see how hospice has worked out for others with the same diagnoses or in a similar situation.

• Consider speaking to a hospice social worker about your options, but be cautious and recognize that this person may be biased in favor of hospice care.

• Research the hospice companies or organizations in your area. Do they have a good reputation? Specifically search your local newspaper’s website for any articles related to the hospice company in your area; don’t just look at reviews.

• Talk to your parent about hospice in a general way. Do they know anyone who has gone into hospice care? How do they feel about it?

• Consider adding a section on hospice in your parent’s living will. Under what circumstances would they consider entering hospice care?

• Extra Credit: I really enjoyed The In-Between by (hospice nurse) Hadley Vlahos. Even though I am not religious, I was interested in Vlahos’ perspective about hospice care, and it allowed me to think more deeply about what makes a “good death.”