Many people consider this to be a sensitive topic. When someone who is on home care services dies in their residence, wherever that might be, expected or not, as professionals we're expected to know what to do. If you have experienced this already, then you've likely already learned some lessons about what to do, or what not to. If this hasn't happened yet, hopefully this post will help you be more prepared for the inevitable.
When a Patient Dies Expectedly
Now, ideally clients are already on hospice and they've got a life limiting illness. Their medical team has recognized this, gotten them the support that they need, started them on hospice, and arrangements are made. Then the only thing that needs to be done when the client actually dies is to call the hospice company. They will show up, their RN will pronounce the client as expired, (dead) and they will proceed to call the funeral home to help prepare the body and have the body picked up.
During all this time, of course, allowing hopefully for a family to sit in vigil, if they have not already. It's a pretty smooth process because everyone has talked about what's to be expected.
Sometimes People Die Unexpectedly
There are many different causes of unexpected death such as a fall, an accident, a head injury, a stroke, or a heart attack are the most common reasons. Sometimes there's even a life limiting illness that was undiagnosed and somebody wasn't aware of what was going on. In those situations you're going to instruct your staff to call 9 1 1. That is the answer. Call emergency services. The emergency services will come out, they will pronounce the client, and they will call the medical examiner. Depending on the circumstances surrounding the client, the medical examiner’s office may require an autopsy, which happens pretty often if it's completely unexpected, unless the person is just very, very old. If the person is in their nineties or hundreds, then a lot of times they don't really question it.
An autopsy could make the family uncomfortable, but it is it's part of the process when it's unexpected or when there's an accident. Post-mortem care should not be given if the death was unexpected.
In either situation, your caregiver would have to make that phone call or call you to make that phone call for them, if they're shaken up. When possible, I advise that you send an administrative staff to the home to support the Caregiver. There's no telling what kind of situation they find themselves in and if they weren't prepared for that situation, it can be traumatizing.
Solicit Adequate Support
You as an agency owner are going to want to make sure that caregiver, who was at the client's home either when it happened, or found the client dead, has adequate support. Perhaps offer counseling, maybe some time off if they need it, but make sure that you're having these conversations with them. It's tough to talk about, but this is the business that we're in. Sometimes you just have to make the hard call and have the hard conversation but don't ignore it. Also, don't just let them figure it out on their own. Make sure that you support them in whatever way possible. (If the client was on hospice, the hospice chaplain is often available for minimal counseling for the clients' caregivers.)
Hospice: Sensitive Topic but Vital
Hospice and end of life is a sensitive topic for a lot of people but it is a major part of our industry. We take care of people toward the end of their lives. In order to be on hospice the physician has to say that, “Within the reasonable expectation or process of this life limiting diagnosis that you have, you could be dead within six months.” That is basically the qualification for Medicare to pay for hospice. Everyone knows, it's talked about, even if they're relatively high functioning at the beginning, it's common knowledge that this possibility is there.
When you were staffing for a hospice situation for an end of life situation, you've got to have that conversation with your Caregivers. This is a non-negotiable rule for me. You should ask “Will you be okay if this client dies on your shift? That could happen at any point. It may not happen today; six months down the line, even a year sometimes, but are you going to be okay if that happens?” If the Caregiver says, no, you MUST respect that. (For a personal story about how this rule came about for me, watch the video in the link below)
It is wise to train your staff on specifics of end-of-life care. Topics like what to expect from a dying body, preparing the body, and respecting family wishes are good options.
End of Life Care is a Different Game
The second thing about placing Caregivers in a hospice situation or a situation where we know the client is going to die is that there should be, what I call, a shift in focus. A caregiver’s spirit is all about keeping people alive and healthy. If you ask a Caregiver what a good day looks like with their client, they'll say "She got up today, she ate, we went out on a walk, she played bridge with her friends. We had a great day - up productive, moving and shaking."
Inevitably, when the client's body starts to fail (at no one's fault), a Caregiver may take their job personally, and might feel like they are failing their client. Again, this can be a hard conversation to have, but you do need to have that conversation, and Caregivers need to be able to shift their focus to comfort care, accepting the client's advancing limitations. Your goal was to keep them mobile and healthy and up and active. Now their body doesn't want that anymore. They are in a different phase of life, and if your agency is going to help a client through the end of their life, everyone involved needs to accept and support this.
That's my advice for now! I hope that this was helpful for any of you. Please reach out if you have any questions. email@example.com
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