Why Caregivers Shouldn't Feel Guilty About Calling Hospice

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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 an elderly parent or other 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 without any quality of life, 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.

How Hospice Works with Nursing Homes

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?

Much-Deserved Pain Relief

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.

Calling Hospice for Terminally Ill Parents

Once a terminal diagnosis is given by the doctor, when can hospice can be called in? When the patient is expected to live less than six months.

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 the 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.

Paying for Hospice Care

Most health insurance covers hospice care. Medicare covers hospice care. At this time, anyone declared medically terminal, with six months or less to live, is qualified to call on hospice for 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.

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Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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37 Comments

This is what really irks me about the whole Hospice situation. Why do we have to wait until we get "permission". if I had it all to do over again, I would have called Hospice so much sooner. In order to admit her to hospice care, my mother only had to be diagnosed with an "Adult failure to thrive" condition. I don't think enough people are aware of this. Also, many Hospice organizations also provide palliative care which can be so helpful long before a person is on the verge of dying. No one is telling the caregivers these things. it is so important to get the word out so that families can get the services and support they need desperately at the end of life.
My dad moved to Luvida Memory Care a while ago. The guilt has been tremendous, but reading other answers to other questions, it's like reading my life. I thank God for this website, and all the participants who are reaching out their hands, and especially their hearts for people like me. I've been so lost, but now I truly have a place to go to find answers. Thank you all
Lots of great points have been brought up about Hospice here. I believe Hospice can be a great way to enhance end-of-life quality of life. Asking your loved one what they want at this time is really important. Do they want to be visited by family friends as found possible and have a social worker and/or spiritual person for support and guidance (of the family too of course)? Do they want any pain managed so that they can be comfortable and yet maintain as much awareness as possible? Do they have any unresolved issues that they need help with? Hospice staff are skilled and experienced in dealing with end of life issues and this support and direction is for the family another huge bonus. Hospice is not a death sentence; some people get better and go off the program. However, it is a wonderful service that can greatly benefit both the patient and their family in a myriad of ways at a most challenging time...and no guilt required!