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The ‘H’ Word-The Good and The Bad of Hospice

What hospice means and how we, as a culture need to change the way we view end of life services.

I recently had to make the very difficult choice to end my elderly cat’s life. It was a tough decision to make, especially because he was declining rapidly but not completely incoherent. The call to the mobile pet hospice was devastating as were the days leading up to it. At the end, I’m so grateful for the service that came to the house and ended his suffering in a peaceful way, in his own home, without fear, with his beloved servants (because let’s face it, that’s what we were) right by his side.

This brings to mind our culture and how we view death. It’s so difficult to say good bye but with home hospice services, the difficulty of death doesn’t have to burden us alone, and it doesn’t have to be frightening and painful. And unlike pet hospice services, human hospice is covered by insurance, is free of cost and does not include physician assisted dying.

As we age, our focus and the focus of our healthcare providers is always life at all costs. Physicians, pharmaceutical companies, Universities, and researchers are continuing to find ways to extend life. I’m not saying that we don’t have a need for this, but there comes a point where medical intervention will not continue to help, and it actually might hinder the rest of the patient’s life. Most people would opt out of continuing painful and invasive treatments if the outcome isn’t promising.

When I was selling assisted living apartments, I would often discuss hospice options with potential residents and their families, especially if they seemed open to having the end of life discussions that we should all be having. Let’s face it, if you’re looking into assisted living, there is obviously some sort of decline that can’t be denied.

What was interesting to me is how many people would respond and say things like, “I’m not even anywhere near being ready to discuss that. Mom is going to live for many more years!” And, yes, of course, that’s the hope for everyone but it’s not always the case.

Many people have had experiences with hospice where the patient was put on service and died within a few days or even hours, so naturally, one would think that it’s truly for the very end.

What people don’t realize is that hospice can and does provide so much more and it’s covered by insurance. It can help save money on medical equipment, medications, care aids, and even incontinence products. In many cases, it can not just extend quality of life, but with symptom management, it can actually extend life itself. I know, you think I’m full of it, but I’ve seen it, and so have many elder care workers!

In my experiences, I saw so many elderly people die in agony with confused family members because the families and trusted advisors didn’t take this step in time. This happens because families disagree on when is the right time and they think that when they make the decision to move forward with hospice, they’re admitting defeat and that it’s going to be days or hours before the end.

The truth is that the worst part about hospice service is that eventually your loved one will pass away, but they will be cared for and it won’t be all on you to keep them comfortable. The best part about hospice service is that, if you or your loved one get better, or even plateau and maintain a certain level of health, you will “graduate” off of hospice. What do you really have to lose?

Hospice requires a doctor’s order and many primary care physicians will write this if the patient has a terminal illness and is declining in other ways. The general rule of thumb is if the diagnosis is to live for six months or less. Not all doctors will bring this up to their patients even though it’s obvious that it might be the best option for comfort care. We’re seeing this more and more in the elderly population where it takes a request from the family or another healthcare provider, such as a nurse from a skilled nursing facility or assisted living to request a hospice script from the doctor.

Many times, pending assessment, the hospice company will qualify the patient and then request a hospice order from the physician.

The good news is that your doctor won’t just put you or your loved one on hospice without a probable cause. The bad news is that you need to be a better advocate for yourself and/or your loved one to ensure that you are taking advantage of all that hospice offers and asking your healthcare providers the tough questions leading up to signing on.

Another misconception is that everyone who is on hospice has to die in a hospital or a hospice center. Yes, there are lovely hospice centers (which are usually completely full) and yes, there is hospice service in most hospitals; however, home hospice is a way to extend the time in your home with comfort measures in place, and most people who utilize home hospice, die at home, surrounded by loved ones.

Let’s fast forward to a terminal diagnosis, a decline in ability to care for yourself, and perhaps another underlying condition. What now?

The best advice I can offer is to request a hospice assessment. And in America, you have choice!

The good news with choice is that if you feel that you’re needs aren’t being met, you can fire your hospice provider and opt for another one. The bad news is, where do you even begin?

Much like home care, hospices are often tied to major hospital networks. Often times, if you are diagnosed in the hospital, you will sign on to the home hospice that they recommend because it’s an easy transition. Just remember that you always have a choice and what the hospital recommends may not even be an extension of the network. If you can, do some homework about the company. You can and should ask lots of questions to the hospice nurse before signing on. Ask friends who they’ve used, or ask the professionals at your local assisted living or skilled care facility for suggestions of companies. Hospice is big business these days so ensure that you feel good about your choice.

Most hospices offer visits from a registered nurse, visits from a chaplain, social services, care aids, medication training for families, medication for pain and symptom management, medical equipment, grief counseling, and more. Ensure that you ask what will be covered and included. One of the less considered benefits of hospice is that the health care comes to you and can cut down on unnecessary trips to the doctor or hospital. If something happens in the middle of the night, there is always a hospice nurse on call so you may be able to avoid unnecessary trips to the emergency room.

The bottom line is that we need to do a better job advocating for ourselves and our loved ones. Hospice is a fantastic service that is underutilized in the elderly and terminally ill population. Don’t be afraid of what it is and what it can provide to not only the terminal patient, but also the family. Hospice can ease the fear that accompanies the dying process for all involved.

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