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. That is a mistake. Hospice is not about giving up. Hospice is about allowing people who are looking at a terminal diagnosis a chance to live their final weeks or months with dignity and quality of life, minus excessive medical treatment that will do little more than extend pain and misery before the inevitable death process begins.
Hospice is about refocusing goals
My parents both spent their last months under hospice care and I’ll forever be grateful. Dad’s dementia had made it impossible for him to articulate pain, therefore he would lie ridged in his bed, but propped up on one elbow, slamming his right fist into the palm of his left hand. Bam! Bam! Bam! Repeatedly he’d hit his hand with his opposing fist. The nursing home staff agreed with me that Dad was trying to pound out the pain. He couldn’t tell that he needed help in any way other than his body language.
It took some paperwork, but finally Dad was placed under hospice care. Within hours, the hospice staff, in conjunction with the nursing home staff, had him calm, pain free and peaceful. He could smile, he could respond.
From that time on, Dad was kept comfortable. After all that he’d been through in the past decade, nothing was more welcome to those of us who loved him. When his time came, he died peacefully in my arms.
Hospice offers a chance to focus on living as well as dying
When trying to save a life has not worked and the person is not expected to live no matter how much misery they endure with treatments that are essentially meant to give them another week or month of life, it’s time for hospice care. Hospice focuses on a holistic approach to support the comfort, dignity and spiritual needs of the person who is nearing the end of his or her life, as well as his or her family.
Contrary to what many think, hospice does give drugs, however, they withdraw drugs that are used to extend life to the detriment of the comfort of the patient. Any medication that supports the patient’s comfort and dignity is continued. More medications are added when needed.
Note that there are pilot programs in place that may eventually allow people to continue on curative drugs should they choose this approach, but at this time, hospice cannot offer this choice. If a person wants to continue curative drugs while they are on comfort care they may be better off with palliative care which is offered through many hospitals.
Hospice does not try to “save” the person. They are there to provide comfort and loving care and to help everyone accept the inevitable. Each of us will one day die. This may be the time for you or your loved one.
The medical system did all that was possible or all that you or your loved one chose to undergo. It’s now time for acceptance of reality and to focus on a new kind of life. That focus is living the best life possible before you die.
Carol is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. She runs award winning websites at _ www.mindingourelders.comand www.mindingoureldersblogs.com. On Twitter, f_ollow Carol @mindingourelder and on Facebook: Minding Our Elders
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Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.