Differences Between Hospice and Palliative Care

When it comes to elderly relatives -- do you need palliative or hospice care?

It's World Hospice and Palliative Care Day, and this event provides a great opportunity to talk about the difference between hospice and palliative care. I'll be the first to admit that I didn't understand the difference between the two services until after mom was diagnosed with cholangiocarcinoma. I did understand hospice to a degree, as relatives had used this service prior to mom's diagnosis. The first time I really understood palliative care, however, was when mom received her first chemotherapy treatments.

After mom's failed Whipple surgery, the oncologist suggested chemotherapy to hold the cancer at bay. The doctors all told mom, without qualms, that her cancer was not "curable" and that the chemo treatments were "palliative." In other words, she would receive treatments that would stem the cancer cell growth until she could no longer take chemo. This was a "chemo for life" program, where "life" part meant that treatments would continue as long as mom could tolerate them.

There are no time restrictions in palliative care situations. Patients can receive palliative care at any stage of illness, whether that illness is terminal or not. The point behind palliative care is to provide comfort for the patient. This comfort is especially important for the patient when the the patient's disease is at its most uncomfortable.

Palliative care can be received at home, in the hospital, in a treatment center, or at a doctor's office. The fuzzy part of this type of care is that it covers a broad spectrum of diseases at various stages within that disease. The important thing to remember is that palliative care is not hospice, although hospice and palliative care go hand in hand.

Hospice is for end-of-life care, and it's all about palliative care...making the patient comfortable through various methods that range from Styrofoam wedges to make bed rest more comfortable to morphine to ease end-of-life pain. Although policy has it that hospice care is for the last six months of life, we learned that the local hospice had patients that were going on three years in treatment. On the other hand, some hospice patients barely see the oxygen tanks come through the door when they exit life.

Although hospice generally is ordered by the patient's primary-care physician* for end-of-life care, no one has a crystal ball. The practice of predicting someone's end of life sentence is based on both fact and guesses. Sometimes facts win. Sometimes guesses far surpass wildest hopes, especially when it comes to family members who don't want to lose that patient.

Interestingly, hospice couldn't begin for mom until her chemotherapy palliative care ended. That "chemo for life" program lasted as long as mom's body could tolerate the limited amount of chemo that she was taking. Since one oncologist earlier in mom's care had the guts to give us a time frame of three to six months of life without any treatment for her cancer, I had at least a base to work from after mom's chemo treatments ended. Mom's then-current oncologist must have known as well, as she ordered hospice for mom when she stopped mom's treatments, and that end to treatment came approximately six months  before mom's life ended.

Hospice provides palliative care, and that's the thrust of their services. In mom's case, however, another goal was imperative: that we try to keep mom out of the hospital. Her capacity to fight illness and infection was low, so home care was the best option. Additionally, mom wanted to die at home, and hospice made that goal a mission in mom's case.

To make a long story short, here are some major differences between hospice and palliative care:

1. Hospice services can be provided at home, where palliative services provided by medical professionals often are provided through a medical facility.
2. Palliative care knows no time restrictions, whereas hospice care is, supposedly, for the last six months of life.
3. Patients pay for palliative care the same way they would pay for any other treatment -- with cash, insurance, or other payment methods. Hospice, on the other hand, takes over the bills and everything is paid through Medicare. At least, that's the current structure in most cases. It's always good to check with your local medical facilities to understand your possibilities.

I can say nothing but good about mom's hospice care at this point, especially on a day when we honor the services provided by palliative and hospice care. The goal? To make these services better all around and as widely available as possible to people who need them.

* Primary care physician can be any type of doctor, from cardiologist to oncologist.

Taking the Leap, Counting on Friends and Strangers

Mom in 1945. The risk-taker.

This is a very nerve-wracking day for me. I made the decision to go "live" with a fundraising effort that, I hope, will help me finish my book about my experiences with mom and her fatal cholangiocarcinoma (bile duct cancer).

I shared my experiences since day one with my Facebook friends, but that's a safe environment. In fact, it's so safe that I've made many new friends through old friends during this experience, and most of those new friends are cancer patients or caregivers.

I draw strength from all my friends, but it's time to expand that circle. I'll tell you why -- it's because those new Facebook friends have become some of my best supporters and sources of information. So, in expanding my circle to include new readers and supporters, I hope to get AND give back even more.

This society is geared to accept a doctor's prognosis and remedies without question many times. My mother was like that. She rarely asked questions and she never advocated for herself, even though she considered herself a risk-taker. But, after living through her experiences, I had to question why the focus is often on experimental "cures" rather than preventive care. I don't have the answer as to how a person might find out how to detect bile duct cancer or any other chronic disease before it's too late. But, I intend to find out.

I also intend to learn how caregiving can become more effective. When I learned about mom's disease and prognosis, I had little time among mom's doctor visits, caretaking, and taking care of my own business to learn how to take care of myself. I learned how to take care of mom through her doctor visits, and even then directions were fuzzy. I did learn enough to teach mom's home health care and hospice nurses how to take care of mom, since mom's disease still remains on the rare side.

That's a heck of a lot of responsibility for someone who knew nothing about chemo, let along vacuum bottles or heparin.

Although my journey with mom was a fulfilling and strengthening experience for me, it also represented many losses. This is one opportunity I don't intend to lose. I need time to finish this book, and I need your help in this goal. Your gift can help me give back to people who may not even know they need my information yet.

Let's get this show on the road. You can learn more at my Indiegogo fundraising site.

PS -- stay tuned. I have a lot of great gifts and surprises coming from some great individuals in my "team."