Hospice: Mistakes and Disappointments

I’d prefer not to write these next words, but they are occasionally true: a hospice will disappoint patients and families.

  • A hospice social worker brings the wrong forms, wrong answers, or wrong attitude.
  • Patients rightly get angry if the chaplain or home health aid says one thing, but does another.
  • Families feel neglected because they phoned on a Saturday morning for an on-call nurse and are still waiting for the visit as evening approaches.

My goals for this website include being upbeat and informative about hospice care. As a pastor in various congregations over many years, I’ve witnessed hospice compassionately serving church members. The hospice “team” helped make the worst time of life become bearable. I was a hospice chaplain and now work with bereavement at a hospice. My current (and past) colleagues are responsible, caring, and thoughtful hospice professionals.

Then why say anything negative? Because . . .

  • Unintentional mistakes are made.
  • Sometimes there was nothing “wrong” done by any staff, but families can still be angry and will blame hospice.
  • Though I’ve only known good and kind hospice staff (and volunteers) . . . there will always be some “bad apples.”
  • When anyone searches for lousy news about hospice (like “killing a patient” by misusing medications or Medicare fraud), it will be found on the Internet.

Bad exists. Bad happens. Inevitably, the rare bad occurrences are usually more tempting to headline and highlight than the frequent, commonplace good.

What are some of the disappointments that patients or families will experience? (And what I mention next is not based on researching formal complaints or sharing confidential data about specific patients at hospices where I’ve worked. Instead, these are generic—but possible—scenarios that can happen at any hospice with any family while caring for a dying loved one.)

The medication gets low at the wrong time. When hospice care takes place where patients live (60% in 2015 of those under hospice care), all of the drugs will be brought to their residence. Maybe the nurse will bring them, or a pharmacy will deliver them, or family members pick them up at a pharmacy. Since the delivery usually has several steps, the odds for problems increase. These are often powerful prescriptions and are restricted in use. Unlike Advil or Milk of Magnesia, you can’t run to the store for more. Especially when approaching a weekend or holiday, I encourage caregivers to be a squeaky wheel. Tell your hospice nurse that you need an ample supply of all critical medication long before that long weekend arrives. Isn’t it the nurse’s responsibility (and the hospice’s) to know the status of the drugs? Yes—but remember they are serving many patients and having a helpful reminder from a family may reduce the problems.

The staff is late. The hospice nurse, and other clinical staff, are serving those “many patients” all at the same time. If one of their scheduled patients has a crisis on the day they will be visiting you, it will affect all appointments, including yours. If you were having the crisis, wouldn’t you want the staff member to stay and address the issue? While hospices try to have back-up plans, there are unpredictable obstacles. For example, a nurse at one patient’s home may be across town, and facing a long drive through slow traffic to get to the next patient’s house. Every hospice wishes it had unlimited resources with plentiful staff . . . along with the Star Trek-like ability to instantly beam a nurse from one location to another.

When you need an answer NOW, you instead talk with an answering service or confront a digital menu. When I have an Internet problem at home, I despise calling the company for repairs. I never talk with a person. Instead I slog through electronic menus and “converse” with a computer. But that’s only for a stupid Wi-Fi issue! What happens when it’s a life and death problem? One of the first questions to ask a hospice, before you or your loved one becomes a patient, is: how do we contact you, especially after regular business hours? Who at hospice answers the phone during the day? Who answers the phone on Saturday night at 11:30pm when your beloved is unexpectedly agitated? If that hospice’s answer doesn’t please you, then consider another hospice.

The medical equipment is old, odd, or broken. As with a pharmacy and medications, the medical equipment is delivered by a “middleman.” Every hospice tries to work with a reliable company that supplies beds, oxygen, commodes, etc. Medicare (and private insurances) likely covers the costs. But your idea of a bed can be different from what is delivered. If you’ve seen a whiz-bang, high-tech bed in a movie, shouldn’t your loved one get that model? Often the options are limited. Will you get what you need? Yes. Will you always get what you desire? No. But if you do get something defective, or is there’s a later-on problem, tell the hospice. However, remember, they will then contact the company that handles the equipment. It will take time.

I could mention other possible problems. They are rare, but when they happen to you, who cares about being part of a tiny percentage? You have a problem that needs to be fixed . . . now.

But please remember:

  • Hospice is NOT one interconnected organization. Each hospice is different.
  • Most people live in places with several hospices. They are for-profit and non-profit. Some are “small” and serve a limited area. “Large” hospices have multiple regional/national locations. Some are accredited . . . but some aren’t.
  • A hospice may have an in-patient facility, while many only visit your home (or care facility) to serve your needs.
  • You can “shop” for a hospice. Invite two or more admitting nurses to visit you. Ask the hard questions. Choose one that seems to fit your needs.
  • If you have issues with them later, consider changing to another hospice. You won’t be penalized.
  • One third (34%) of all hospice patients die within a week. Brevity is never an excuse for mistakes, but it underscores the unsettled (and unsettling) environment for many patients and families, and the hospice staff assisting them.

Hospice happens at the worst time of your life. A loved one is dying. You are weary, fearful, and intimidated. The vast, vast, vast majority of hospices and hospice medical staff will support you with excellent care. But there will be always be problems. For example, a dying person may be “stable” in the morning and shockingly agitated by the afternoon. You want an “instant” response to this unexpected, overwhelming change. Regardless of how quickly the hospice staff responds, it will never feel fast enough. We want a medication to instantly work! However, it may take precious hours and days to find the right combination of drugs that bring comfort.

Please tell a hospice’s administrators about any concerns. If you want a different nurse, make the request. If a social worker is never “on time,” let the supervisor know.

I have worked with the best and brightest. I have been beside nurses when a patient’s pain explodes and have witnessed extraordinary care given—sometimes for hours—until the patient is comfortable. I have known chaplains and social workers that sit beside a struggling family member and never once mention that he or she is now missing their child’s birthday party. I have known home health aids that take the time after giving the bath to listen to a patient’s story about a new grandchild or how they met their beloved spouse.

In my current work, I talk to families and friends after a loved one’s death. In the thousands of calls I make each year, a literal handful mention a concern. But even those few should never happen.

Hospice is wonderful.

Hospice helps make life easier.

Hospice gives dying patients comfort and provides support for families.

And sometimes, though rarely, hospice will disappoint. If that happens to you, I hope you tell the hospice about your concerns. Give them a chance to learn from their mistakes.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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Comments

  1. Thanks for bringing up this issue, Larry. Those of us who are involved in hospice care hope that we never make mistakes and that everything goes as well as it can possibly go for the families and patients in our care. Despite all the advance science and medicine have made, life and death are still often unpredictable – and sadly, sometimes people will blame hospice for a difficult death. May we all bring as much compassion as possible to the people we care for, especially in those darkest of times.
    Katherine Arnup PhD http://hospicevolunteering.wordpress.com

  2. I’ve had two terrible experiences with a hospice agency. Unfortunately, it was only hospice agency to choose from where a friend (and my parents) lived. By the way, I am a certified End of Life Doula.

    The latest disaster that I incurred with them was in getting my dying friend home from the hospital.

    She had been in-patient with the hospice earlier in the week. She was returned to the hospital because hospice could not control the pain. When the pain was controlled, we called them to start up services in her home on Thursday of the same week. They said because of the holiday weekend, they would not be able to admit her until the following Tuesday (the holiday, New Year’s Day) was on Monday. I told them she would be dead by Tuesday (and she was).

    I hired a private duty nurse to get my friend home. The hospital worked with us and sent all the meds home. She came home on Friday and died peacefully on Tuesday and in no pain.

    Shame on this hospice agency; I won’t even go into how horrible they were with my father.

    I live in Connecticut where we have many wonderful hospice organizations to choose from. I don’t understand why the area where my dying friend lived only had one hospice.

    [From Larry Patten – with Patti’s permission, I edited her response a little, making sure that the specific hospice she rightly had concerns about was kept “anonymous” rather than specifically identified.]

    • Patti – I am so sorry this happened to your friend, and your father. Those experiences leave difficult memories. However, I am glad you continue to help others as they near the end of life. Your work is important. (And thanks also, for letting me make your response a bit more “neutral.” I figure any reader can contact you for details . . . if they so desire.)

  3. Thank you Larry for this article. I love that you not only address the problems but inform the reader that while it’s never pleasant to disappoint, it will happen occasionally. As a nurse if I disappoint someone it hurts me more. I work hard to earn the trust of my patients and their family and it can definitely set you back. What’s worse is to have an on call nurse that doesn’t share your values.
    When I train a nurse I tell her to document and order anything needed in front of the patient and get it on the way. Never ever trust your memory or notes.

    • Thanks, Jeannine! I appreciate your comments, and your obvious commitment to caring for your hospice patients.

  4. Thank you for this. I’ll keep it to share. In bereavement work, I occasionally meet people enraged at a doctor, a hospital, a nurse, or hospice in general. They were furious that the person they love suffered and died. The need to blame someone was strong, although the helpers made mistakes, too.

    My husband had an incurable and rare cancer. The best lymphoma experts could only experiment. One of the medicines was a big mistake, but the doctor did what would be done to stop swelling in a normal patient. The outcome was devastating. During those years, my heart learned what I already knew in my head–the kindest and best intentioned humans are fallible and can make mistakes or flounder looking for answers. There are many possibilities for relieving suffering at the end of life and none work in the same way for everyone. All we can do is try to help–with love.

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