Living "weeks to months" with no food and sips of fluid? Really? - page 2
My father in law was placed on hospice yesterday. He has had nothing - literally - to eat for weeks. Weight loss - which he did not need in the first place - has been tremendous - he is over 6 ft and... Read More
Jun 24, '12Gastrostomy tube is not indicated for someone with GI bleed nor no bowel movement in a month --all indications that peristolisis in GI tract not functioning. After 25+ years with Hospice and palliative homecare those persons who are only taking sips of fluids/ bite of food now and then and who have unresolved family issues/ denying death, will linger longer 6wks-3 months that those who are accepting of death. How do they live: by depleting protein stores within the body continuing to loose weight till skin and bones along with sheer willpower.
This scenerio played out in my own family with Dad's brother just 3 months ago. He would only talk about how he wanted to be in next years fishing tournament, despite metastasis to almost every bone, palliative radiation, fentanyl patch and 40lb weight loss due to not eating just 1-2 bites and minimal fluids x 2 months.
Wife would tell me he's dying, cousins in denial "we can't talk with him as he won't talk with us". The physicians tiptoed around the words "dying process". Spent many hours with cousins giving them words to break the ice and get unsaid words into the open. When I heard he was in ICU on Neo-Synephrine drip as pressure down, refused foods/fluids x 3 days "cause something in throat, can't swallow"; nurses holding morphine "cause pressure down" made the 3 hr trip to see him and facilitated meeting with hospitalist, aunt and myself.
He had always said over the years after grandparents died, " no machines, cremate me when I get too sick". I met with him and we discussed that there was no more currative treatment; instead comfort care could be provided to keep this pain under control and that morphine COULD be given despite low BP to facilitate him being pain free. Hospitalist then chimed in after I broke the ice. Uncles response: " get me out of this hospital so I can see my dog and die at home." 2 days later, he was home on Hospice. Open conversations with my cousins ensued, they rotated hours to help care for him. He had less than 8 oz fluids a day. Oxygen was ordered but he threw off the nasal cannula; family used it only last 2 days. He died 3 weeks later, a few hours after watching a Phillie's baseball game when HE was ready.
My best advice is to help facilitate conversation between family and hospice, seek clarification if something bothers you and trust your gut. Sending you strength to get through the coming days.Last edit by NRSKarenRN on Jun 25, '12
Jun 25, '12Thank you for sharing this story, Karen. It adds another dimension to this discussion. Great points.
Jun 25, '12Quote from griffinchetNRSKaren. thanks for sharing such a personal story.I wouldn't call the nurse inexperienced, as there have been several cases I have attended where the individual has sustained, although comatose was present, with no nutritional intake. The body has a way of metabolizing fat reserves( i.e. glycogen, adipose, etc.) in order to obtain nutrition.
I would definitely raise an eyebrow to the statement that oxygen will likely delay your father in law's demise. If anything, if he is hemorrhaging in a unspecific location it's impossible to determine his life expectancy. Oxygen will have little effect if the BP is below the normal range, what's going to transport this oxygen? But, we all know the brain and heart are the first to receive the limited supply we may carry. I would urge you to encourage your father in law, if it means that much, to opt for a G-tube. Life expectancy is very bleak at this moment.
Besides the quality of life issue........this patient doesn't seem like a candidate with his hx of "about 3 L of fluid sitting in his stomach" and a ""bleed" somewhere inside they cannot find and he is not willing/able to go through surgery to find it" that has required a transfusion....this probably isn't a viable option and boarders on medical advice.
Jun 25, '12I find that when families ask hospice staff "how long" they often receive information that is troubling to them. In this instance it is troubling because it seems too long.
The bottom line is that we do not know beyond certainty how long a patient will live. I once had a young woman with no measurable BP survive for 48hours. I have cared for many people who took nothing PO and received a few oz/day of fluids per GTube in form of meds and flush who then continued to live longer than one might expect...weeks to more than a month. Shoot, we even see renal failure dialysis patients stop treatment only to start making urine again. We just cannot predict, with good results, what a timeline for death will be.
I would agree that the nurse may have been inexperienced given that she gave you any type of a guesstimate on your first visit. I typically teach staff to provide a disclaimer about the validity or accuracy of our crystal balls, most are made in china and are not reliable for US citizens.
I hope that your granddad is comfortable and that his wishes for end of life are honored.
Jun 27, '12I tell my patient's Families to look at the pamphlet we provide that has a breakdown of symptoms to expect over the patient's decline. This way they can think about it and talk to me about some of the things their loved on is already experiencing. I tell them this is general guideline and it does not mean your loved on will have all these symptoms at the time of death. I hope every hospice has a tool like this the nurses and IDT can all use the same language. I tell them what could happen to the patient based on Pt history and Primary hospice diagnosis. It's also a good point that Patients can linger when they have unfinished business. Giving the family the okay to tell the patient they will miss him and will be okay without him is important. Use your team... Social workers & pastoral care when family is receptive. Ask the hospice if you can have a family meeting with the nurse social work and PC.
Jun 28, '12Everyone is different and the body goes to extremes to survive. My father was placed on hospice after being treated for pancreatic cancer for a whopping three months. My father actually stopped eating before he was placed on hospice and stopped drinking not long after that. He died three weeks after he was placed on hospice and didn't have a morsel of food. When he died he was 6'1 and got down to about 130lbs. He literally looked like a skeleton with skin draped over his bones.
Jul 9, '12Personally, I would not call the supervisor on the nurse. Atleast not immediately, because it sounds like you didn't particularly like what she had to say as opposed to being concerned about your father-in-law. perhaps you could have a discussion with another nurse visiting your FIL, or the on-call staff so you can have a second opinion. Maybe a conversation that goes in the lines of, " My FIL's situation is like x,y,z with a hx of a,b,c. Given that he's been literally NPO for such&such a time, and with low output, we just wanna be prepared as family as to an estimate time of his last days. His regualr nurse so&so made a comment that with recent research, pts have lived for such&such a time with the same situation that my FIL is in. Have there been such cases as well with your experience, etc, etc?" I think that would sound more genuine& concerned than just asking "is it true that.....?"
Jul 10, '12marshall, keep in mind that your fil had been receiving ivf up until he had been admitted to hospice...
so that would sustain him longer than someone who had been dehydrated upon admission.
the bottom line is, i have had pts that totally and thoroughly defied anything/everything i was ever taught.
since then, i always told families they'll go when they're good and ready...
and not a moment before.
hospice has taught me that it is predictably unpredictable.
would love to hear from you.
Jul 13, '12I have been taught by many excellent nurses to NEVER offer a timeline to a family-you will always be wrong. We all can tell stories about patients whose deaths were unusual, people that held on for weeks while NPO, people whose loved ones stayed at the bedside around the clock for days only to leave for 5 mins on day 12 and guess what? That was when the patient died.
We have a situation at work now-a newish nurse told me today "It will be 3 to 5 days" Really? I never did find out who gave her that info ,time will tell but I don't think this resident is going anywhere fast,she is young and her body is strong but now she is NPO,no artificial feeding. Thankfully the hospice staff on the case have been great with the family and are attempting to educate the staff but so many of us THINK we know it all and don't hesitate to share that knowledge.I have seen the upset this kind of thing causes a family-I have heard doctors (they really do think they are gods) predict death to the loved ones of a dying resident and when the prediction does not come true the family is a mess. Why can't we ever admit that some things are beyond our control?
I hope your FIL is comfortable and you and your family receive the support you need.Good luck
Jul 14, '12The medical director of the hospice where I work says that pt's can live about 14 days on NOTHING my mouth (that means when he gets to the point of no sips and no ice chips). But then again that is not considering the fact that your father has some sort of bleeding process happening that could accerlerate his decline. Again, as stated above, there are no crystal balls, but 'days to weeks' sounds more realisic than "weeks to months". Also, as stated above, oxygen will not prolong anything, it will only provide comfort. MY thoughts are with you during this difficult time.