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Choosing palliative care; what is your experience?
I would like to hear from or about other people who have chosen palliative care rather than cancer treatment. I would like to know the age of the patient. I am an 86 year old woman who has rejected treatment for adenocarcinoma sigmoid colon, metastasized to my liver. I have done a fair amount of genealogy and for fifty years I claimed that “everyone in my family dies of heart attacks and strokes.” Mother Nature made a liar out of me! I rejected radiation and chemotherapy because I have had a decent 86 years and choose to end my years without the potential discomfort generally associated with those treatments and surgery was not an option.
I have numerous co-morbidities which I have survived for about five or six years. I will be balancing the elimination of anticoagulants without which I will be in danger of having a stroke against taking anticoagulants and be in greater danger of bleeding again. I had a colonoscopy in June to determine the source of blood loss and then started much heavier bleeding from my colon until my hemoglobin was 6.4. I was unaware of what was happening as my children and the hospital staff determined that I should be released to hospice. Three units of blood and the bleeding stopped so that when I arrived at home I was greatly rejuvenated and declined hospice. I have no pain but I do realize what may be in my future: either colon blockage or future bleeding are possibilities. What else?
I came to Mayo Clinic Connect sections on congestive heart failure, chronic kidney disease, central sleep apnea, and neuropathy. I didn’t expect to add cancer, but here I am. What was your experience? What am I facing? Thank you. Best wishes for everyone who is traveling this road.
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I'm 69 and admire you and feel the same way. I have multiple severe health problems but generally feel well, altho pain sometimes gets in my way. Please keep us informed as to how ur doing and what's going on. God bless you and yours.
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1 ReactionJobliO-
Perhaps you already know, but Palliative care and Hospice care are not always identical, especially if you rely on insurance, (private or government) and are not self funded.
Palliative care includes any care that is not aimed at curing disease. I have an NET stage 4 cancer originating in my small intestine. It has spread to liver, bones, etc. I am told " it is not curable, but it is treatable. " My treatment goal is to arrest the growth of the cancer and reduce/eliminate symptoms. People here on Mayo connect have lived with this type of cancer for 5, 10 & even 20 years. But technically much of our treatments are Palliative.
Hospice care insurance is a very limited subset of Medicaid. which eliminates many treatment options.
I am linking an article that both defends Hospice care from inflammatory criticism and yet also points out the financial limitations on treatment options that may actually cause more discomfort for the patient.
I hope this is helpful as you make decisions about your own care.
Praying your remaining years are filled with peace, joy and family.
https://www.lifesitenews.com/blogs/palliative-care-doctor-explains-why-americans-are-suspicious-of-hospices/
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8 Reactions@jobli0, I respect that you have the power to make these decisions and have some control over what the remainder of your life will look like. It is brave, take credit for that. People often talk about the strength of people that 'fight' until the end and preach the ‘never give up’ mantra. I believe that knowing when to be at peace takes so much more strength.
I have stage IV lung cancer with metastasis to the liver. It is under control right now, but my type of cancer is known to be incurable. I’m 54 now (4 years post diagnosis), and my current treatments are a breeze compared to some. I know that won't always be the case, and knowing when to just find peace in my remaining time is something that I think about.
There was a member of the lung cancer community that posted early last year saying that she was stopping treatments. During her time, she did end up having some minimally intense treatments, she continued to travel, she traded in her motorcycle for a scooter and continued to live her life. We last heard from her in early June. I take comfort in knowing that she truly lived each day and left us on her own terms. Wishing you well on your path. Take comfort in having the power to make your own decisions, and to do this your way. Hugs!
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11 ReactionsWell put about palliative care. Lots of other diseases aren't curable but can be managed now until we die naturally of old age (think of AIDS/HIV, or Parkinson's).
I believe we're living in an exciting time when certain kinds of stage 4 cancer are either at that point or about to arrive there, but we won't know until they've had a few more years to follow our cases and analyse the data. In the meantime, it's a rough road to follow, and long-term maintenance certainly won't be possible for all types of stage 4 cancer, so the hospice route is a very reasonable and peaceful choice for many.
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4 ReactionsHi @babse, welcome. I'm so sorry to hear that your primary palliative care nurse has left her position. Is there no replacement for her? What about home visits from the other nurse?
They short on help. Otherwise. I. Agree with you.
I feel too well for palliative care. Thanks
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1 ReactionThank you for your response.Very
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1 ReactionThanks Jeff! Your help is greatly
Appreciated!
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1 ReactionThanks to all. Your response was helpful.
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