Let’s begin by briefly reviewing what hospice is. The website of the National Hospice and Palliative Care Organization contains the following definition:
“Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.”
For excellent overviews of hospice care, see the following authoritative sites: National Hospice and Palliative Care Organization, the American Hospice Foundation, Caring.com, and WebMD.
Hospice organizations also provide services to loved one of the terminally-ill patient. This includes respite care and bereavement counseling. The latter is provided for up to one year after the person’s death.
Unfortunately, many terminally ill patients and/or their caregivers delay engaging hospice care. They wait much longer than would be optimal. Instead of beginning hospice services when the physician first estimates the person has only six months of remaining life, some wait until death is truly imminent – when death is expected to occur within a few days - not within six months or so. Many wait until the person is literally on his or her deathbed.
In some cases, this delay is due to the fact that the very word “hospice” scares the person and/or the caregiver. They may be in denial and unable to accept the fact that the person probably has less than six months to live.
The caregiver and patient may (irrationally) feel that engaging hospice care services would be tantamount to signing the patient’s death warrant. It may seem that as long as hospice care is not started, the person will live longer than six months.
However, this delay robs both the terminally-ill person and the caregiver of what can be a wonderful and peaceful period of time. It robs them of what can be a months-long beautiful conclusion to their relationship. This is illustrated by the following story about my personal experience with hospice care.
When I was caring for Ed, my beloved Romanian life partner and soulmate, a dear friend suggested that I begin hospice care for him. Ed had Alzheimer’s, and thus the decision about hospice was up to me. As often happens, I kept putting it off, saying that Ed wasn’t quite ready for it. In truth, I was the one who wasn’t ready.
Finally, one day I decided to discuss the issue with Doug Smucker, MD, a colleague of mine at the University of Cincinnati. Dr. Smucker was specialized in end-of-life care. I had so many questions. I wanted to know if I could change my mind and stop – and subsequently restart - hospice care. I wanted to know what services could not be provided when a person is receiving hospice services. And I had so many other questions.
After patiently answering all of my questions, Doug looked at me and softly said, “The real question, Marie, is how can I help Ed have the highest quality of life in the time that is remaining?”
That completely – and almost magically - changed my thoughts and feelings about the matter. Instead of focusing on Ed’s impending death – as many caregivers do at this time – I began to focus on his remaining life. I began spending many pleasurable hours thinking up - and implementing - activities designed exclusively to improve Ed’s quality to life.
I decided that I would begin visiting more often. I would bring him even more of the stuffed animals he loved so much. I would have a violinist come play a special concert for him in his room at the Alois Center. I also decided to bring my little Shih Tzu, Peter, whom Ed loved deeply, to visit. I would read to him from the New York Times. I would bring him his favorite treats – mostly chocolate! And I came up with so many more activities that I knew would bring him pleasure.
Once I found this new way of looking at the issue and once I started carrying out these activities, I discovered that not only did they bring Ed happiness, they also changed my life for the better. Had I not engaged hospice services when I did, we would have missed out on this special time together. We would have missed out on the beautiful months-long conclusion of our 30-year life together.
This is a revised version of an article first published on the Alzheimer’s Reading Room.
Marie Marley is the award-winning author of the uplifting book, “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy” and co-author (with Daniel C. Potts, MD, FAAN) of “Finding Joy in Alzheimer’s: New Hope for Caregivers.” Marie’s website, www.ComeBackEarlyToday.com, contains a wealth of helpful information for Alzheimer’s caregivers.