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Your loved one is terminal: when do you call hospice?

by Carol Bradley Bursack, Editor-in-Chief

 

Many people feel that hospice care is only for the last weeks of life. Many, also, aren't aware that most health insurance, as well as Medicare, cover hospice services. The mission of hospice care is to help people die with dignity and without pain. Once a person is medially declared terminal, they qualify for the medical, spiritual and emotional care for which hospice is known.

 

A billboard in my city carries a simple message: "Most families say, 'Why did we wait so long to call hospice?'"

When I talk with our local hospice folks, they say that is the message they hear most often. Yet, I understand why people do wait. Calling in hospice for the care of a loved one means you need to come to terms, on all levels, with the idea that this person is dying. The person who is dying needs to come to terms with this issue as well, however, from my experience, it's the family who is most reluctant to accept a diagnosis that the disease is terminal.

Accepting that our own or a loved one's life is limited to a few months, weeks or days is gut-wrenching. However, when we do get to the stage where we accept that nothing more can be done to extend their lives, or at least extend their lives in a way where the person involved feels there is going to be any quality left if heroic measures are taken, we are finally in a position to help.

Calling Hospice Means Taking Action

We can stop wringing our hands and feeling helpless and we can decide that we will do whatever we can to help our loved one have some quality of life for whatever time he or she has left. We can rally the troops and call hospice.

My mother had to cope with a great deal of pain during her last years. Sometimes she would look at me and say, "Can't you just give me a little black pill?" I'd smile tearfully and say, "No, Mom. I can't. But I'll do everything I can to make sure you are as comfortable as possible."

Mom was in an excellent nursing home at the time. However, they could only do so much with pain control without overstepping their boundaries. After the doctor in charge decided that Mom had only weeks to live, he finally gave permission for us to call in the local hospice.

I'd had this same hospice organization with my dad's care, and they were superb. Hospice and the nursing home worked seamlessly together to give my dad the best care possible. He had his familiar nurses and aides, because he remained in the home where he'd lived since his brain surgery left him with severe dementia. However, he also acquired expert hospice nurses, a counselor and a second chaplain (this choice is optional). Who can get too much love and support?

For Mom, the situation was much the same. From the time hospice took over, Mom was out of pain for the first time in years. Hospice gave her a bone cancer drug which gave Mom nearly complete pain relief for several weeks. As her condition grew worse, more medication was added, but Mom was content and no longer pleading to die. A couple of months later, Mom died peacefully, happy to join Dad.

In both cases, I'd have liked to have called in hospice a bit earlier, but the nursing home was doing a fine job, and you do have to have a terminal diagnosis before hospice can join the care team. That diagnosis was up to the doctor. The nursing home staff helped me with the paperwork so the doctor had what he needed for the diagnosis and we were finally able to make the call.

Once a Terminal Diagnosis Is Given, the Hospice Team Can Be Called In

I hear often that many people think you only call in hospice during the last couple of weeks of someone's life. Often, their loved one suffers needlessly, and the family lacks support they could have had with a good hospice team at their side.

I've known people who have gone on hospice care more than once. They beat their disease back for a time, went off hospice care and lived decently for awhile, then called hospice once more when the symptoms returned. This is not highly unusual.

Most health insurance covers hospice care. Medicare covers hospice care. Hospice will come to wherever the patient calls home, whether it's a residential home, an assisted living center or a nursing home.

Hospice also works as the palliative care team in many hospitals, so if a terminal person is hospitalized and will be more comfortable in the palliative care unit than a room where "cure" is the only language spoken, then the palliative care unit is most likely where the person will be cared for. Palliative care simply means caring for people who are dying by keeping them as comfortable as possible. Again, this implies an acceptance of impending death.

No One Needs to Die In Pain

One well used hospice motto is, "No one needs to die in pain." That is the essence of palliative care. So, why wait until someone has suffered months before calling in hospice? Yes, the person dying, and the family, have to come to grips with impending death, but most of us would rather die with relative comfort than in agony, and if that means coming to grips with reality in order to make this possible, then I'd recommend working on that. A spiritual leader can often help families get to this point of acceptance.

Once acceptance is reached - at least enough acceptance to pick up the phone and call your local hospice - you will likely find that their expertise and compassion will help all of you internalize this acceptance and come to terms with the reality of death, which is something we all must, one day, face.

The compassionate care of our hospice allowed my family to have quality time with our parents during their last months. Hospice care allowed us to be present as Dad and Mom passed out of this world, in peace. Since my parents were going to die no matter what I did, I couldn't ask for more.