On May 28, 2001, my father died of pancreatic cancer at his home in Palm Springs, California. Cancer, in whatever form, is never a pleasant thing, but from the day of his official diagnosis, we knew that his fight for survival would not only be an uphill one, but one that would be practically unwinnable. In fact, pancreatic cancer generally has a very poor prognosis, even when it is found early. Pancreatic cancer is often called the "silent killer" because it usually has few symptoms early on and spreads quickly, so it is rarely discovered when it is still in an early stage. Often by the time the disease is diagnosed, surgery to remove the cancer isn’t possible. This is exactly the situation we found ourselves in.

We were lucky in our struggle in that we had an ace in the hole, my wife, who works in cancer research and was able to get us plenty of referrals to experts in the field. But despite our efforts, there was very little that could be done.

Finally, after a courageous 17-month struggle on everyone's part, but especially my father's, his case was determined to be terminal. By this time, every member of the family was tired; emotionally, spiritually, and physically; and my father was ready to accept the inevitable.

On one of the last meetings we had with my father's doctor, he suggested that we enlist hospice care, even though none of us wanted to acknowledge that the battle was nearly over and that it was the next logical step. We all stepped up, however, and did what we needed to do. My father signed a request for hospice care as well as a DNR (do not resuscitate) order, and we all went home.

Getting Hospice Care

In our case, selecting hospice care for my father wasn’t a difficult decision. Even with its reputation for glitz and glamour, Palm Springs must not attract a lot of hospice business, since there were only a few providers in the area. Fortunately, we received a referral from my father’s doctor, and since the doctor had given him such good care over the previous 17 months, it was easy to trust his recommendation.
Others probably aren’t so lucky, but in our research, we found that many others simply don’t know what to do, which leads them to make uninformed decisions. To prevent this, take the following into consideration:

• The overall reputation and experience of the care provider — the group as well as the individual who is actually rendering the care — Try to meet the person who will be rendering the care to make sure it's someone you like and can trust. Trust your intuition on this one.

• Costs and insurance issues — Most insurance plans cover hospice care, including Medicaid and Medicare, with only a few minor costs to the patient. The Medicare hospice program covers costs related to a terminal illness.

• Is the facility residentially based or an at-home provider? — Depending on the facility, hospice care can be provided by a center where the patient goes for care or a provider can go to the home of the patient to provide care. A lot depends on the services made available by the provider, the condition of the patient, and the desires of the patient and his or her loved ones.

Getting Care

If there is a good thing about hospice care, it’s the fact that nearly everyone you will end up dealing with has considerable experience dealing with the situation you are in. They know how to deal with not only the patient who is in need of their help but the family members who must deal with it, as well.
Another benefit of hospice care is, if you desire, pastoral care. Nearly all hospice facilities offer the services of a residential clergy person or can help you find someone of your faith who can provide this care.

What to Expect

The most important aspect of hospice care, of course, is the treatment the actual provider gives to the patient. Perhaps less important, but still worth considering, is the treatment you, as the survivor, receive. After all, the patient isn’t in this issue alone. You could be in this situation for a considerable amount of time. Unfortunately, this can not only be painful, but nerve-wracking as well. As a result, be sure to avail yourself of the full services of the facility. You should also take advantage of whatever services your house of worship, social services, friends, and others offer you. Even if it’s something that is seemingly as insignificant as a cooked meal, an opportunity to hold someone’s hand, or anything else, accept it graciously. Not only is it good for you on an emotional level, but it will free your mind for other things as well.