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.

Some Advice for Survivors

When I decided to write a memoir about my mother’s cholangiocarcinoma and my time taking care of her, I promised myself I would write my story within the parameters of love, forgiveness, and gratitude. But, this is one time I will defy my own guideline. I want to speak directly to hospital volunteers, other nonprofessionals, and even professionals like ministers or surgeons who feel compelled to talk about their successful experiences with any disease or surgery.

My mother underwent several small surgeries and a failed attempt at a larger surgery in hopes of eliminating the tumors in her bile duct and liver. One surgery, called the Whipple, is particularly intense and can last up to eight hours or longer. Mom elected to have this surgery, since it was the only hope she had of ridding herself of her disease's fatal nature. Dad and I felt she wouldn't make it through the first cut of the knife, considering her weakened condition, but she was determined.

During the thirteen days between her doctor's appointment and her surgery date, mom sought out every thread of hope she could about the success rate for this surgery. Her search for hope was understandable, considering the seriousness of the procedure. But, other people, at the mere mention of "Whipple" or "bile duct cancer" had their own stories to tell. None of these stories boded well, since they were all filled with hope. Let me explain...

If you feel you need to buck up a patient by telling him or her about your own miraculous operation or recovery, just stop and imagine what it would feel like if you had to undergo a major surgery and the surgeon gave up on you. How would you feel if you learned that your surgery was a failure, when so many others were seemingly so successful? My father and I cringed every time someone told my mother about an uncle, aunt, brother once removed, or pet that had undergone a Whipple surgery five or ten years ago and who were living happily today.

Although mom made it through the knife, she didn't make it through the pre-determined eight hour time frame. She knew, after the nurses wheeled her bed into recovery, that she didn't spend enough time in that operating room for any type of success. She had been in surgery for less than two hours. The surgeon decided, after he opened her up, that her cancer had metastasized far too widely for him to help her.

Mom then spent the following week after that failed surgery agonizing over why she failed, like it was some sort of test. She compared her failure against all the success stories she had heard. Granted, she sought out some of that encouragement, but an inordinate amount of that bragging (yes, bragging) was unsolicited.

In sum, my father and I are happy for cancer survivors, particularly those who underwent a successful Whipple surgery and are living a good life today. But, if you want to expound on your success, go tell it to a mirror or to another person who survived what you survived and see if you can one-up each other. Stop talking to critically ill patients about your success. One alternative is to simply wish that patient luck. That’s all. Then, go on your merry way, please. Thank you.