Written by Laird Landon, Ph.D.
Recently, the Caregiver Support Foundation was accepted as a member of the International Neuropalliative Care Society. To me, this is a very important link in our network. If you have watched some of our videos, you know that we are very much in favor of a palliative relationship between caregivers and their loved ones—the receivers of care. Our work over the coming months and years will include a great deal of discussion and hands-on palliative care training for caregivers, both professional and family. Among other things, we will begin work on producing a series of videos dealing exclusively with the palliative care concept.
Perhaps at this point, I should provide a little backstory concerning palliative care—where it came from, what it is, and when it is administered. The story begins in the post-war years in Britain.
During those recovery years after the war, a British nurse, social worker, and physician named Dame Cicely Saunders invented the hospice concept. Saunders dealt with patients of all ages who were facing limited days and living with a great deal of discomfort. She coined the term “total pain” to include both physical and psychological pain. She invented hospice to treat total pain. The term “hospice” comes from the Latin word hospis, meaning host or guest (interchangeably). Other derived words include hospital, hotel, and hostel.
The doctor’s hospice concept was quite simple. At the point where a patient could no longer be cured, she focused on making them comfortable and safe in their final days.
The medical and psychological regimen used in the hospice concept was called palliative. “Palliative” springs from the Latin word pallium, which means “to cloak.” Saunders sought to cloak, or cover up, the symptoms, pain, and anxiety in the terminally ill. She shared the idea with other physicians, many of whom also saw its value. The hospice movement and the palliative concept were launched.
This cloaking was not only achieved with pharmaceuticals but also by making the patient comfortable and reducing stress. It involved regular visits from family and friends, good food, and prayer. As the 20th century ended, the system was being widely used for cancer patients. Public policy began to fund hospice because it recognized the importance of comfort over futile attempts to cure the incurable.
While hospice thrives at the end of life, palliative care is becoming a pillar of medicine throughout life. Beyond curing the body, we now acknowledge the importance of quality of life for the whole person. With respect to neurological diseases that are incurable, palliation is needed well before hospice is an option. Quality of life for these individuals requires palliative care. The Caregiver Support Foundation is dedicated to helping family caregivers provide palliative care to their loved ones. Palliative care is truly the foundation of what CSF promotes. We help caregivers become palliative care providers. The caregiver’s mission is to “Keep your loved one safe and comfortable and provide moments of joy.” Those moments of joy are just as important—sometimes even more important—than safety and comfort.
The palliative concept has been proven valuable to family caregivers responsible for loved ones suffering from brain failure due to diseases like Alzheimer’s and Parkinson’s. When caregivers realize that they can never “fix” the problem—meaning they cannot cure the patient—palliative care becomes a natural choice. It not only relieves the stress of the patient but also contributes positively to the caregiver’s peace of mind.
Over the coming months, we will be engaging more and more professional caregivers, creating a network to help caregivers understand and provide palliative care for their loved ones. We will also be posting our video series on the subject.
