Brian, I shouldn’t post on this thread, because I have done so on earlier threads, much to my regret. This subject is too close, and extremely painful to me, personally .
I recognize and respect your opinion on general medical emergency life-threatening issues, but not when it involves Parkinson’s, complicated by probable Lewy Body dementia, & consequent brain destruction. This is not in your area of expertise as a Podiatrist.
My beloved husband of 45 years, a brilliant MIT graduate with a master’s degree, died in March of 2011, after suffering for 14 years. I did my very best to care for him, constantly arguing in the later years with hospitals and rehab care after several Parkinson’s crises, to please respect the medical importance of scheduling his needed meds and meals, so the meds would work.
He suffered so when he was hospitalized and in rehab. The med team and the food delivery team didn’t/couldn’t deal with the timing issues - too complicated. If these are not controlled, the Parkinson’s meds aren’t absorbed, and don’t work.
As his autonomic nervous system shut down, gradually at first, and then cascading, he lost his desire to eat and drink, in spite of my best efforts to make his favorite foods, provide his favorite beverages.
When his internist, and neurologist specializing in autonomic disorders, then the Mayo clinic in Rochester MN could no longer help, hospice was my only hope to keep him out of pain, and free of fear, hallucinations, and overwhelming anxiety.
I looked for and found a wonderful Roman Catholic hospice, who came in, brought in a lift frame, hospital bed, a soothing Harpist playing his favorite music, and who helped manage his pain and make his final days quiet and peaceful, as he wanted.
While I respect your expertise in podiatry, I do not consider you qualified to express an opinion in this particular medical circumstance, or to pass judgement on those of us who are left to carry out the wishes of those we have loved for decades.
Please know that I am not alone in finding your general aspersions cast toward those of us who have had to make difficult and heart-breaking decision to let those we love so much go without the complications of extensive medical technology doing harm.
Do podiatrists take that oath - “first do no harm”? What happens when a feeding tube forces food into a stomach and bowel that are no longer functioning, when liquids are pushed into a dying body whose kidneys have shut down?
Tube feeding can do miracles in some situations, but not all. Stick to your specialty, or get informed about the complexity of end-of-life complicated issues.
This is rambling and long winded, probably because it comes from a dark place of pain and loss. This isn’t an intellectual discussion for me, it is deeply personal.
In addition to being a Podiatrist I also work for a Catholic hospice (not in the clinical care of patients.) I also will be serving as the chairman of a national pro life group that is deeply involved in end of life care. And we have directly cared for loved ones at end of life in very trying circumstances.
So even though I’m not a clinician directly involved in patient care, I am familiar with the topic at hand here and I’m in communication with the prolife leaders in the field. The opinions I express are not uninformed and this is an important pro life battle. Many people are dying prematurely from arbitrary withdrawal of hydration and nutrition and over medication with opioids, sedatives and antipsychotics.
So while I truly respect your views and your experience, I also have extensive experience in this field and feel a duty to point out the pro life aspects of this debate. Thank you for sharing your opinion.
Good hospice care is carefully monitored with individualized plans of care and feeding is tapered and ceased when these unfortunate events occur. It's not difficult to handle these things on an individualized basis with proper staffing and properly trained staff. These are not reasons to deny assisted hydration and nutrition.
We routinely get calls from patients who have feeding tubes for years from things such as esophageal cancer, who are active, mobile and wish to continue receiving feeding even on hospice care, but have been told by numerous other hospice providers that they must discontinue tube feeding if they want to be on hospice. This is a lie. There is no reason whatsoever that patients who have been successfully maintained for years with tube feeding have to give it up just to get accepted onto hospice care.
There are circumstances where assisted nutrition and hydration is overly burdensome. In those cases there is nothing wrong with discontinuing them or not initiating them. There are individuals who make their wishes known in advance directives that they do not desire assisted nutrition and hydration should they become incapcitated and be unable to express their wishes. Their wishes must be respected.
But the idea that tube feedings and IVs are always bad or burdensome is simply false and it is a sad reality that many people are dying prematurely due to dehydration from premature withdrawal of fluids and food.
Thank you for sharing your story. I can see how painful it was for you, and how deeply personal this is. Thank you for educating all of us. Your story is very moving and thought provoking.