Hospice care is palliative care, but palliative care is not hospice. The difference between these two types of care is something that I have found difficult to clarify myself let alone explain to others. However, this care is a fundamental part of treating any chronic or terminal illness.
Our culture is steeped in language that makes accepting the terminal diagnosis of ourselves or a loved one more difficult to accept than it needs to be. Doctors say, “I’m sorry, there’s nothing more we can do. You might want to look into hospice care.” Patients tell their doctors that they want “aggressive treatment,” until there is nothing else that can be done, then they will go on hospice care.The crux of these conversations is that medicine will do everything possible and then when you give up you will go on hospice care.
My dad went into surgery with a smile and hope. He came out with severe dementia. Something unexplainable at the time had happened and Dad became a statistic – one of those “poor outcomes” we hear about. My head knew this tragedy was permanent, but my heart wanted my “real” dad back. The kind, loving, intelligent man whose love for me was steadfast. I wanted him back. Unfortunately, my family and I had to learn to accept the fact that Dad would never be the same.
End-of-life discussions may not seem to fit with the commonly cheerful image of the holiday season. After all, who likes to talk about potential death? Yet, too many people die in a manner they would not choose. When we consider that the true reason for this spiritual season is to celebrate our faith, what could be more fitting than incorporating the message that we want the best for our loved ones for their entire life - and that their life will include the death process?
Dear Carol: My mother was diagnosed with mixed dementia (vascular dementia along with Alzheimer’s) at age 67. She’s now 75 and the doctor says she’s in Alzheimer's stage seven. She’s had two strokes and takes medication for high blood pressure. Mom doesn’t know anyone and simply sits and stares into space without reacting very much. All of her doctors are vague about her life expectancy. I don’t expect the doctor to know exactly how long she will continue this way but I’d like some idea. Are they uncomfortable with my question? PT
Whether or not November was chosen as National Hospice and Palliative Care Month because of the sad reminders of holiday deaths that Thanksgiving and Christmas bring around each year, I don’t know. But to me, the timing is perfect. All deaths leave behind days on the calendar that are particularly painful for loved ones. Birthdays, wedding anniversaries, the births of children and grandchildren. All magnify the lack of presence of the deceased person. However, Thanksgiving, Christmas - and even the New Year - come around at the same time for all.
Dear Carol: My family is having a serious disagreement over signing papers for our mom who has just entered a nursing home. I have Power Of Attorney and am favor of signing a Do Not Resuscitate (DNR) form for Mom. She has always told us she didn’t want to linger when her time came. While she is going into the nursing home for physical, she is showing some signs of early stage dementia so it’s important that we get this done. My brother and sister both think that a DNR is cruel and that it’s like killing Mom. They think that everything should be done to keep her alive as long as possible. Her POA even states that she doesn’t want to be kept alive at all cost. Because of this, I think I can push through the DNR, but I feel bad because my siblings are upset. I know that they don’t want to see Mom suffer unnecessarily but they feel guilty taking this formal step. How do I get through to them that there’s a point where people allowed to go? CD
When people lose their ability to articulate what is causing them pain, this pain is often overlooked by doctors. A recent Slovenian study presented at the Congress of the European Academy of Neurology (EAN) in Copenhagen and conducted by Dr. Martin Rakusa investigated this problem. It involved 452 patients with an average age of 65 who had been treated for diabetes over a period of many years.
Many people with Alzheimer's disease have been administered less pain medication than peers with no dementia who suffer from similar painful diseases or injuries. Since people in the later stages of Alzheimer’s can’t communicate well other than by generally acting in an aggressive manner, they can’t self-report pain. Some professionals have, in the past, concluded that the neurodegeneration caused by the disease must lower the sensitivity to pain, so they administer less medication for pain relief.
It’s far too easy for onlookers to view someone with dementia as unable to feel pain. Since the disease eventually renders most people helpless and cognitively inexpressive, they can't articulate what hurts or why they are upset. Caring researchers have now brought new insight to this issue. In an article on altered pain processing in patients with cognitive impairment, Medical News Today states that new research shows how wrong previous ideas about what people with cognitive disorders could feel have been.