6 Reasons Why Hospice Disappoints

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For the dying, and for those caring for dying loved ones in the final season of their life, hospice can feel like earthbound angels have arrived to help you.

I’ve made thousands of phone calls to individuals as part of my hospice job in grief support. I do not exaggerate when declaring that gratitude for hospice staff is frequent. Perhaps the enthusiastic compliments were for a home health aide who regularly visited for months or an admit nurse only with the patient in the beginning moments of hospice care. Both were dubbed “life savers!” Equally true is frequent praise for the entire agency: “Everyone was wonderful to Dad!”

But “frequent” is not 100%. At the Medicare site that compares hospices in the United States, what do you think is the percentage for the statement below?

Family caregivers who would definitely recommend this hospice to friends and family:

___ 62%

___ 70%

___ 84%

___ 90%

___ 94%

In other words, Medicare has determined that ___% of people, after being served by a specific hospice agency, would vouch for that company to the people they know.

One of those five numbers is the correct answer. That means a small to significant percentage of respondents were likely disappointed by the care for their loved one.

Hey, no hospice is perfect! They are, after all, staffed by humans. Even more, when hospice care enters your life, it happens at a terrible time. If the professional hospice experts occasionally say or do the “wrong” thing, isn’t that inevitable? And any hospice patient or their family members can be more scared, frustrated, and exhausted than they have ever been before. When an occasional human mistake happens while other humans are at their “worst,” a hospice agency can easily be labeled as failing, as a company you wouldn’t “recommend to friends and family.”

There are a herd of reasons why an individual hospice professional or an entire hospice agency can disappoint. But let me limit my listicle to a half-dozen dreary possibilities:

#1: Hospice will disrupt your home.

Are you messy or organized? Do you live in cramped apartment or a sprawling mansion? Does your family have one or ten (or more) people under the same roof? Regardless of how well you clean your house, or how many live at your address, you probably have routines and habits unique to you. Now you or someone you love is dying and those routines and habits are forced to change. It gets worse. Today or tomorrow, the hospice staff—those strangers—will arrive to provide support. More people! More hassles! More chaos! Whatever remains of your routines and habits are tossed out like the week’s garbage when these new people barge through your door.

#2: Different staff at different times.

If you have researched hospice, you know a “team” of professionals help you. Or, if you have never considered end-of-life issues, a hospice representative has now conveyed information about the “team effort:” nurses, social workers, home health aides, chaplains, and volunteers. You might grimace a bit at meeting them, but those professionals are your team! However, after the first week with hospice, your team never stops expanding. When you need someone late at night, it’s not the RN you first met. Or you want your social worker on the weekend, but it’s a different person. The home health aide you liked is sick or reassigned, and the “new” one is, well, not like the “old” one. Why can’t you have the same people each time? You were promised a few soldiers, not the entire army.

#3: If your family has any conflict, it will get worse.

Our romanticized notion of a beloved’s last days include everyone sharing the tasks and spending “quality time” with the patient. However, dysfunction rules the day! A family’s long-festering tensions continue even as a loved one nears death. Some family members immediately pitch in, while others only help if asked and if it’s convenient. Some never lift a hand to assist. Debates about the drugs used for pain management create friction. Battle lines form over keeping the loved one at home or placing them in a nursing facility. Certain family members are always angry, and blame the hospice staff for any actual or imagined problem. Regardless of how big or small the house is around a hospice patient’s bed, it can become a warzone.

#4: The medications will scare you.

The United States has an opioid crisis. With hospice care, the “crisis” related to drugs may be different, but it’s very real. Many medications for symptom management are intimidating. Morphine! Haldol! Methadone! It’s one thing to take an aspirin for a headache, but to give an opioid for the relentless agony caused by a cancer? That is seriously intimidating. Additionally, how can you not sometimes worry if you gave the right dose at the right time in the right way? In hospice, family and friends are the primary caregivers when the patient remains at home. The hospice physician has reviewed the needs, the RNs gave instructions, and you have been told a nurse is available by phone day and night. But all the reassurances vanish when you are exhausted and your loved one has abruptly gone from “2” to “10” on the stupid pain scale.

#5: Hospice will say NO when you want them to say YES.

What if you want that hospital bed a friend of a friend used with a special mattress and the remote control features downloadable onto a phone? You absolutely want the finest bed possible for your mother. But the hospice staff says it won’t be covered. What if you found several comments online about the hospice benefit covering all the medications similar to the ones your grandfather currently uses (including supplements he’s taken for years)? But the hospice staff says only the prescriptions related to his cancer will be covered. Because of what friends have told us, or what we read, or what we thought we heard, families may assume Medicare covers “everything.” It does not. Caregivers will be disappointed and upset when certain requests are refused for their loved one.

#6: No one will show up “instantly” and an hour can seem like a lifetime.

It’s almost midnight. It’s the weekend. It’s when you, the caregiver, haven’t been on speaking terms with sleep since Obama was president. Your experience with hospice can be counted in weeks, but the illness has been in your life for years. And right now, your loved one has become overly agitated or the pain has suddenly screamed out-of-control. Didn’t the hospice representative at the beginning say the staff was on-call 24/7? You need a nurse in the next seconds, not in an hour or so like you were just told on the phone. It doesn’t matter what the hospice explained to you about the response times, and who cares about the printed words in large font on page 17 of the Policies & Procedures? You need a nurse now, dammit.

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Family caregivers who would definitely recommend this hospice to friends and family:

___ 62%

___ 70%

 X 84%

___ 90%

___ 94%

Nationally, based on current (to October 2019) information shared from thousands of hospice, over 8 of 10 people would recommend the hospice agency that served their loved ones. Is 84% a good or a bad score? As a random and limited example, I glanced at the 14 non-profit hospice agencies in the Denver, Colorado area. Only looking at the “would you recommend” question, their scores ranged from 74% to 95%. Is one a loser and the other a winner? And even at the “best” hospice, what happened to the other 5% who would not recommend it to their friends?

Statistics for comparing hospices are beneficial. But data never tells the whole story. Word-of-mouth about a hospice also matters. However, with all the details that can be compiled, and with a particular hospice agency striving to do their very best, there will always be concerns. After all,

  • They are caring for your loved one.
  • The care happens during a traumatic, emotional time.
  • All families likely have differing views about end-of-life needs.
  • Patients, caregivers, and hospice staff are human. Mistakes happen.

Please let a hospice know if you would not recommend them, and why. A good hospice agency will learn from its mistakes. And, if warranted, also don’t forget to praise them.

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Comments

  1. The questions on the satisfaction survey can be confusing and many families don’t understand many of the questions. If your loved one died in a nursing facility they answer the questions based on the nursing facility not the hospice.

    • Kelly:

      I agree with you! I have reservations about the “hospice compare” data. Near the top of the my list is the question: Who is more likely to complete and return the forms? Will it be people who were pleased with their hospice experience or disgruntled with it? I fear the disgruntled will have more “incentive” to respond. But, this Medicare information is now the benchmark, and will be regularly used by the “industry” and “consumers.”

      Thanks for your comments!

  2. There is low turnout for the surveys. Keep in mind that there is a lot of anger when someone dies, the family may displace blame. Not all hospices are created equal. I have been working in the world of hospice and palliative care for almost 20 years and it us the most rewarding thing I have ever done.

    • Diane:

      I have heard the return figure may be around 20%. And I could be wrong! But I generally agree with you about the “anger” and the “displace blame” as contributing factors for completing and sending in the forms. As with you, I view hospice as hugely rewarding, and cheer-lead for it every chance I get (including a whole lot of writing about hospice care!!). However, there are always problems and concerns and ways to improve.

      Thanks for taking the time to make a comment!

  3. My mother received hospice services in her home for several months prior to her death. Two days prior to her death, her condition rapidly worsened. This was over a weekend, and the only hospice staff available was one nurse for consult by phone. After she passed, I told the hospice my mother should have had the same resources as those who die on a weekday. The hospice now provided teams seven days a week.

    • Thanks, Jennifer . . . oh how I wish your mother did have those same resources. But I’m glad you were enough of a squeaky wheel to help them see their “mistakes.” And that they did make some changes.

      • It was Hinds Hospice. I was so grateful for the services they provided that I did public presentations for them for around three years. I have been fortunate to have them provide services for two other family members since then.

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