Is a severe stroke considered terminal with regards to a DNR and living will?
My mother is a severe stroke patient. She is DNR and has a living will stating that for any terminal illness no extraordinary measures are to be used except to provide comfort and relieve pain. My questions are (1) if she has this Living Will why is the hospital placing a feeding tube in her nose to the stomach? and (2) is a stroke considered a "terminal illness"? She has only had a saline drip since being admitted Sunday...none of the meds she was on before such as for her congestive heart failure and no nourishment of any sort...is a feeding tube to provide liquid nourishment again the living will wishes? She has lost all ability to communicate which makes this difficult and I am her daughter and healthcare surrogate. Thank you.
The laws pertaining to advance care directives differ significantly from state to state. A stroke is not necessarily considered a terminal illness so the living will may not provide much guidance in this matter. However, if, as you indicate you are your mother's health care surrogate, you should be able to require the hosptial not to do any form of care that you do not direct. If they do not comply with your wishes, you should contact a lawyer to enforce your rights.
My husband also suffered a stroke and had congestive heart failure as well. He was put on a feeding tube and we had a living will and DNR instructing no extraordinary measures as well. I questioned the doctors and made sure I met with his doctors and developed a hospice plan as he was never going to come off the feeding tube, always be ventilator dependent and would not gain any function back of any paralysed areas. Make your wishes and what is in the living will known to the care team in charge of your mother. A feeding tube is considered extraordinary measures.
You may find that removal of the feeding tube is far more difficult depending upon the hospital's practices. I discovered that there are nursing homes and hospitals, particularly those with religious affiliation, that refuse to remove a feeding tube once inserted. You need to review their practice and policy. Trying to have her moved to another hospital may also be an issue - they may argue she is not stable enough.
My father had a "malignant" stroke, could not swallow. He was a DNR, in early stage 6 of Alzheimer's. The neurosurgeon informed us that he would likely never be able to speak or swallow because of the area of the brain impacted, and would need a feeding tube for his remaining years. As his agent under the Advanced Directives, with my brother's agreement, we never had the tube inserted. He passed within five days of his stroke, long before any lack of feeding would have impacted heart function. Sometimes it's a matter of timing, getting there before the hospital intercedes. In any event they should have consulted family.
Speak to the hospital, but be prepared for pushback requiring legal intervention.
Thanks for all the helpful information. Mom passed away Tues. Aug 10th in residence at our local Hospice House. She was in the hospital for 6 days and Hospice care for 4 days. This group has been invaluable to me during this time and earlier this year when my father-in-law was diagnosed with early Alzheimers and dementia. Thanks again to all of you.
My Godfather, a New Jersey Policeman, had a severe stroke that kept him from swallowing, he lived for 25 years with a feeding tube, and died at 101.
My husband had a severe stroke, and had a feeding tube for about 5 days, then slowly regained most of his prior abilities (except his logic was scrambled). Every stroke is different, and each person is different. Working with the medical team and learning all that you can is most important. On my husband's stroke, only 60% survive 90 days, he was one of the 60%, he did pass away just weeks past the 3 year mark - which was the average survival from the type of stroke he had.
Getting a clear assessment of the type of stroke is critical. Getting a doctor to take the time to help a family understand reality vs. hope for a miracle. So many times we continue well past where the patient would want us to stop, more for our own needs than their wishes.
Continuing with feeding and meds makes sense if the stroke, even if severe, offers some level of quality of life. In my father's case, an MRI wasn't possible because of his pacemaker, and the neuro had to use clinical assessment, in lieu of a full contrast CT to confirm the fatal nature of the stroke. In our case, it was truly an answer to our prayers for a cardiac event to spare him -- and us -- the agony of end stage Alzheimer's. He went fast, no pain, with his pride and integrity intact.
There is no standard definition or diagnosis as to severity levels of strokes. So you can't compare them to each other until we get a diagnosis reading, your motor cortex has 250 cu. in. of dead space, the location normally would control the upper body on your left side. The penumbra surrounding that damaged area covered an additional 100 cu. in. and included the rest of the motor cortex, all of the sensorymotor cortex.
After a stroke, there is potential for recovery so a feeding tube is required to provide nuitrition to sustain. In my mother's case, I had a PEG tube inserted because I wanted to feed her additional nuitrients and Chinese stroke recovery medication--it was a battle to accomplish this, but I was finally able to get the doctor to allow my feedings. My mother was 93. She did recover a bit, but aspirated and had pneumonia, from which she recovered but retained fluid in the lungs. Unfortunately, the inexperienced doctor overloaded her with fluids by increasing her tube feed and she died from respiratory failure. However, in retrospect, the feeding tube did keep her alive, and if medical mistakes by the doctor had not been made, she could have lived and gradually recovered some functions--although the quality of life was compromised. The Chinese medicine did help--but we did not have the chance. Stroke recovery is possible, but a long and hard road.
Most of the posters here seem to advocate for feeding tubes, even in the case of severe stroke. These decisions are made by family members, usually at a point where the parent (usually) is in no position cognitively and/or physically to participate in the decision. Where a medical or clinical diagnosis indicates a chance of meaningful recovery, and no other illness would countermand the decision, a feeding tube to bridge to self feeding makes sense.
But I wonder if the person being fed through a tube, lying in bed, in diapers, dependent totally on others for their survival would agree with that decision to prolong their lives. Life is precious, and when a meaningful life is possible, should be sustained by all reasonable methods. I know too many people who decided that a life of tubes, inability to communicate or comprehend, and guilt for what they know their care implies, make clear they want no part of prolonging life.Not from a place of depression and resignation, but from a place of inner peace.
But meaningful must be in terms of the patient: not as a tutorial for "how to" feed and medicate for practitioners, whether traditional or alternative, not as a rote adherence to religious ideology, and not as a way to give meaning to the lives of family members who have gotten so emotionally entertwined that their emotional survival depends upon the physical survival of the patient.
When I read of the measure taken for patients well into their 80s and beyond, by families who cling to the hope of life, I can only shake my head. I suspect that if the patient truly understood their chances, truly understood of what 'meaningful' meant in the context of their former active life, they would opt to end it peacefully rather than take on the rigors of any physical or cognitive therapy and life of dependence. There are exceptions, I suppose, but not that many. In this most primal of life events, even the human animal senses when it is time, and simply wants permission to pass. What is more distressing is how many families ignore the spoken or written wishes of their family member and continue intervention.
IT WOULD ALL DEPEND ON AGE OF STROKEE. AND THEIR FIGHT TO REGAIN AS MUCH AS POSSIBLE, WHAT WOULD BE THEIR WISHES? AND WHAT PARTS OF THE BRAIN WERE AFFECTED.
I HAD A MAJOR BLEED STROKE IN 94. AT 50 YEARS OF AGE.....HAD A STOMACH FEEDING TUBE FOR 5 WEEKS OF THE 7 WEEKS I WAS IN HOSPITAL AND REHAB. THE DRS TOLD MY MOTHER I WOULD END UP IN A NURSING HOME. I NEVER SAW ONE!
YES, I AM MORE OR LESS 1/2 A PERSON [ LEFT SIDE AFFECTED] BUT I AM COMING UP ON 16 YEARS OF LIVING A PRETTY NORMAL LIFE.!!! AND LIVE ALONE NOW. I TOOK 24/7 CARE OF MY 93 YEAR OLD MOTHER FOR SEVERAL MONTHS BEFORE SHE PASSED. PLEASE DON'T WRITE OFF ANYONE JUST BECAUSE THEY MIGHT NOT GET BETTER. ESP "LOCKED IN" STROKEES...I KNOW SO MANY THAT CAME OUT OF THAT STATE AND FUNCTION NOW QUITE WELL. MANY BETTER THEN ME.
I AM ALSO THE FOUNDER OF.... CENTRAL PAIN SYNDROME ALLIANCE...www.centralpain.org.... i HAVE ACCOMPLISHED ALOT POST STROKE. IF YOUR LOVED ONE GOT ZAPPED IN THE THALAMUS/BRAIN STEM AREAS BE AWARE THEY MAY BE IN BAD PAIN....
SO THIS DECISION SHOULD BE CAREFULLY WEIGHED AND I WOULD WAIT SEVERAL WEEKS BEFORE ANY DECISION WAS MADE. I WAS IN ICU 2 WEEKS BEFORE THEY GAVE US ANY HOPE.
BLESS YOU ALL. MARY SIMPSON
One different point of view, My Godfather, Uncle Johnnie, was the chief of police in West Milford, New Jersey for many years, he had a stroke some 27 years ago, and as the stroke caused him to loose the ability to swallow, he was given a feeding tube through his stomach, and he was fed this way until his death at 101. He lived in a nursing home with his brother for many years. The entire town celebrated his 100th birthday. He had a rich, full life, was well loved and honored for the remarkable citizen and person that he was. He was mobile, and except for his problem of not swallowing, he did quite well with the liquid diet. Strokes are funny things, mine effected my vision, somtimes they are devastating, there are so many different stages of stroke, one has to be careful with the decisions made for stroke victims.
My husband's stroke was severe, however it takes a Dr's note to get those documents activated, and I was only able to secure one that covered for 6 months. After that, no one would get one - now I am paying off (slowly) mountains of debt that he had accumulated.
If muscle loss for swallowing were the only issue, and the mental capacity of the patient was more or less intact, feeding tubes are worth considering. But if the patient has other issues, such as later stages of Alzheimers, ALS or other terminal illness... quality of life is in the mind of the beholder.
Get advanced directives settled in advance. Don't put yourself in the position of having to decide for someone else, and don't put your relatives in the same position.
My 87 year old mother had West Nile disease. She had (has) a good chance of surviving if her body was strong enough. She previously was strong and independent, mentally very capable. As a result of the disease, she could not keep food down and refused it. We had a PEG tube put in for about 2 months. She is now stronger, receiving PT and living at home with 24/7 help. That said, she is angry with me for not allowing her to die. The issue is very ambiguous.
2 minutes ago You said... My 77-year old mother has Alzheimer's and 2weeks ago had an apparent stroke. A clot in either her cerebellum or brain stem is suspected, though all CT scans show nothing. Before this happened, Mom had some aphasia, though age could say some short sentences. She knew who we were, and was still oriented in the present day. She couldn't manage a fork anymore, but would willingly eat what we fed her. She could no longer walk and was incontinent, but she was cheerful and loving and happy.
After the event, she was intubated for a time to protect her airway, but was weaned from the ventilator within a few days. She sleeps a lot, but has progressed to the point where she will turn her head and look at someone who says her name. She will watch people walking across the room, tracking them with her eyes. She also does a fair bit of staring into space, and when she does look at you, there's no sense of recognition.
She does not speak, and does not follow any commands/requests (squeeze my hand; blink twice for "yes"). The hardest thing is she won't cooperate with swallow tests. She clenches her teeth if we try to place any food in her mouth. For now, she's on an NG tube to give her strength and time to recover.
What we're struggling with now is where we go from here. A geriatrician offered the opinion that the stroke pushed her into last stage Alzheimer's, that she won't recover more than she has, and that we should take her home and provide comfort care until she passes away.
Today, the doctor in charge of her case gave an opinion that she may recover more, to her baseline. He recommends inserting a PEG tube which would allow her to be taken home and cared for as she recovers. (I'm committed to keeping her at home and out of a nursing home. We've had a live-in care-giver for her for nearly 2 years.)
She has no living will, and I am her health care agent. My quandary is which do I believe? If she's now last stage Alzheimer's, it would be cruel to insert the tube and keep her in a state that will never get better. But if she's a stroke victim with a chance to live a life like she'd had, I'd hate myself for robbing her of the chance.
I love my mom deeply and am not ready to lose her. But I want to do the right thing by her, if I could just be certain what that is.
Hi Mary, I havent got a solution but I am in the same situation as you. My mother has been on a feeding tube through her nose for 4 weeks and they have to take it out at the end of the week. She also has dementia and cancer as well as having the stroke just after Xmas. I also dont know what the answer is. She is nearly 88. We can only do our best for them at the end of the day.
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