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  • Gary Toyn

Jimmy Carter, My son, & 6 Misconceptions About Hospice

I was saddened to hear former President Jimmy Carter's announcement that he is going on hospice care. He is, however, teaching us something very important about the dying process.

He is teaching us to embrace hospice care.

I’m not a medical professional, nor am I anyone important, especially as it relates to hospice care. But I have a stake in this conversation because my wife is a hospice nurse. I also buried my son not long ago after he died of a very rare form of cancer.

I believe I have a unique point of view because I’ve seen hospice from both the perspective of a patient’s family and from being married to a hospice professional. And what I’ve learned through these experiences has taught me some important lessons about hospice.

Saddest of all is I’ve witnessed many heartbreaking situations where families have unwittingly failed to take advantage of the benefits and privileges of hospice care that they were entitled to.

I’m writing this because I’ve seen too many families suffer unnecessarily because they don’t know what hospice does, how it works, and why they need to get their loved one on hospice as soon as they learn of a terminal diagnosis.

Here’s my list of six common misconceptions about hospice:

Misconception #1: Putting my loved one on hospice care is like giving up on them.

The aim of hospice care is to help the patient enjoy the best quality of life possible in what time they have remaining in this life. But hospice care isn’t throwing in the towel. It’s giving your loved one specialized, focused care that most of us lay people can’t provide, or we’re not qualified to give, nor are we usually inclined to give the type of care they really need.

Caring for a terminally ill loved one is hard work. It’s hard physically, emotionally, and spiritually, but you don’t have to do it alone. You shouldn’t do it alone. And not just because it’s hard, but because your loved one deserves the best care possible because once they get the best care, it can often extend their life, not end it sooner.

My wife has had many patients go off hospice simply because they were receiving such good care they no longer qualified for hospice. I know a man admitted to hospice with pancreatic cancer (usually a terminal diagnosis) and was later taken off hospice because his health was no longer declining. Yes, he eventually went back on hospice when the cancer returned, but hospice is credited for helping him live much longer than he would have otherwise.

As compared to those who don’t go on hospice at the time of a terminal diagnosis, this study shows that people on hospice live longer and have a better quality of life, than those who delay hospice care.

Misconception #2 – Hospice means my loved one will die in a hospital or facility.

My wife sees her patients in their homes. Sure, there are times when their home is a facility like assisted living or a skilled nursing facility, but that’s where these people live. Hospice care goes to wherever the patient is living at the time.

Misconception #3 –Hospice care is giving up control

Once my son went on hospice, his wife Claudia and my wife were constantly talking about how to help my son lower his pain and increase his ability to function. They would tell the nurse about his current levels of pain, and the nurse had direct access to the physician to change or add new medications. Without hospice, we would have had to call the doctor, leave a message, wait for the nurse to get back, or have to wait for an appointment, which would have taken days or weeks.

Hospice made the process simple and efficient, giving my son access to rapid care that lessened his suffering. The nurse was open to trying new approaches to treatment that my wife would suggest, based on her experience.

While I know ours is an usual case, I tell it because I want to underscore the concept that hospice is there to help and not just dictate to you what care they will give. Yes, they have limitations, and if you work together on behalf of your loved one, it will ultimately make your loved one more comfortable.

In my son’s case, the biggest issue was pain management, which is a challenging issue for most medical professionals, but for hospice, the focus is completely different. Their focus is on patient comfort, so they could give him pain meds that a traditional doctor couldn’t, or wouldn’t normally give. In my son’s case, his pain was so intense, they were able to give him a fentanyl patch that immediately relieved his intense abdominal pain.

The downside was that it came with other side effects, like drowsiness, constipation, nausea, etc. Working with the nurse and doctors, we were able to mitigate those symptoms, adjusting the dosages to find a tolerable balance.

Misconception #4 – I’ll get better care from my own doctor.

Especially as it relates to my son who was 34 years old at his passing, having a “hospice focus” ended up saving him from enduring some aggressive medical procedures that were recommended by the emergency room physicians.

My son had aggressively growing tumors on his kidneys and urethra, and the E.R. doctors wanted to go in and remove the tumors. It wouldn’t have been a real solution but would have ultimately made him more miserable trying to recover from major surgery in his final days. Having a "hospice focus" meant he opted for a different kind of comfort care. Care that allowed him to pass much more peacefully.

The issue is that doctors and hospitals are laser-focused on finding a solution that puts the patient’s life at risk. Consider the terminally ill woman with congestive heart failure who collapsed at home. The family called 911 and emergency services arrived. Immediately they shocked her heart, intubated her (put a painful tube down her throat to put more air into her lungs), yet she still died. The momentum of the healthcare system was unstoppable. That’s because their focus must be on solving the problem that put the patient’s life at risk.

We see in most hospitals, where aggressive treatments and even risky surgeries are performed on terminally ill patients, simply because the doctors don’t want to be sued for not doing everything possible to extend life.

There’s also times when medical centers/hospitals are motivated to offer expensive treatments because we have a pay-for-service model here in America. This study found that our fee-for-service system “does not fully ensure the full measure of comfort and psychological support that hospice is meant to provide.”

Hospice care is different. They are laser-focused on the patient’s needs. They’re focused on the patient’s comfort, peace, and quality of life. Your regular doctor has a different focus, not because they don’t care, but because they face many pressures that require them to be aggressive, often at the expense of the patient’s comfort and emotional needs.

Misconception #5 – I can’t afford good hospice care.

All hospice care is covered either by Medicare, Medicaid, or the VA. Most private insurance companies also pay for hospice. The hospice company gets paid by the government or the insurance carrier, so the patient’s family pays nothing for the care. In my son’s case, the VA paid for bi-weekly visits from a registered nurse, a social worker, and the doctor who visited him when he was admitted, and they paid for 24-hour in-home care in his final days. They also paid for all his medication, and his supplies for his colostomy and urostomy, they even brought in a hospital bed into his living room so he could sleep better, but also to help him be more comfortable when visitors came to see him.

The hospice company also provided a bereavement counselor to help his wife Claudia deal with her grief, along with helping her make the necessary plans for his finances, funeral, and interment. They also provided chaplain services that were most welcomed and appreciated.

Misconception #6 – Hospice is only for those with cancer.

Yes, my son had cancer and was on hospice. But my wife sees patients with dementia, diabetes, heart failure, stroke, kidney disease, and just about any other illness where the prognosis to live is six months or less.

Final notes

Keep in mind that the hospice company won’t pay for long-term maintenance meds not related to the patient’s terminal diagnosis. For example, if the terminal diagnosis relates to cancer, they’ll cover all the pain meds and supplies, but they won’t pay for meds to lower cholesterol. Each hospice company has a different formulary, so check ahead of time to be sure.

I would suggest you read this amazing article from the Mayo Clinic, which answers almost every question about hospice. It also gives some very sound advice about the 24/7 care offered by hospice, and a list of 9 types of medical professionals your loved one can expect from a hospice company. From doctors and nurses, pharmacists, social workers to bereavement counselors. They’re all focused on caring for your loved one.

I know, talking about death and dying is not pleasant. It’s especially uncomfortable when your loved one is facing a terminal diagnosis. But please don’t let your fear or discomfort cause your loved one to suffer unnecessarily.

If you know someone who is facing end-of-life decisions, please send them this article, or refer them to this article about hospice care. It will help them make informed decisions and lessen the list of regrets that usually accompany the passing of a loved one.

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