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End of life advice

Kelly1974
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My Mum is in hospital after being diagnosed with pneumonia, with underlying Stage 4 Lung Cancer, spread to the lymph nodes.  The hospital has been treating the pneumonia with antibiotics but I have had to fight to get the Palliative care team involved as they didn't appear to be concerned with Mum's very obvious deterioration. Mum is very 'uncomfortable', sleepy, very slurred speech and eats nothing. Mum drinks very little so I have had her put on a drip for rehydration as that was a major concern daily. Mum has been in hospital for 13 days now and we are waiting for a Palliative bed closer to home.  I have read everything I can about this illness and symptoms and have fough for her to be put on morphine, which she is now receiving and has made a massive impact on her, but her quality of life is low.

I teach trainee nurses and they keep asking if Mum is on End of life care (being anything less than a year to live apparently?) and I am not sure tbh.

I would also be interested in knowing what's coming. I am now in contact with the MacMillan nurses who answer some of my questions but I am the type of person who, without the aid of a crystal ball which I know is not available, needs to know what is coming. Mum's prognosis three weeks ago was less than a month, which I am of course not holding anyone to, but given Mum's current condition I wondered if anyone else could tell me, in their experience and more straightforward than a nurse can say without fear of compensation claims, what is coming up now. How long can she go on without eating? What new symptons should I be looking out for? What happens closer to the end?  Any advice is welcomed, I don't want the flowered up version, I would prefer to hear the real version from someone who has lived or is living the same nightmare I am. Thanks xx

  • Welcome to Cancer Chat Kelly although I'm sorry to read about your mum and for the reason you are posting.

    I'm sure some of our members will be along soon to share their experiences with you but I just wanted to share some information we have on our website about what to expect in the final weeks and days of a person's life.

    I hope this helps Kelly but if you have any questions you can give our cancer nurses a call as well on 0808 800 4040, Monday - Friday between 9a.m - 5pm.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Offline

    Hey,

    First off I just want to say I am so sorry about what you are going through.

    I lost my mother a few weeks ago to Breast Cancer Stage 4. 

    I feel as if I can really connect with you about what you are going through as I was in your position not too long ago. From my mums first suspected diagnosis they gave us a matter of 3 weeks with her. Within those three weeks at point she was very sleep, hardly eating and drinking and just was not herself but at some points she was perfectly normal, full of life but still we all knew she was weak. 

    She was in a lot of pain as her cancer had spread to different parts of her body, main areas such as her chest, liver and stomache. We had her on morphine but she reacted bad so we tried another drug to help her with her pain as that was what the doctors main focus was "to make her feel comfortable" and she part of the "end of life" 

    I cannot explain to you what is coming as everybodys situation is different, but I would say prepare yourself for what could possibly happen, checking online and reading knocked me back but also gave me hope (she would have months) but it turned out to be all wrong. So it really does not help.

    You will know when closer to end is and you will feel it. Your mother will of course be your mother always but it wont feel as if she is your mother.. In my experience I never wanted to believe it was the end as I was in denial but when I look back I see the signs. 

    The main ones were: not eating and hardly drinking (loss of appetite), Jaundice in her skin and eyes, always tired and sleepy and lastly shortness of breath. Honestly it felt like mum was a baby, she couldnt do anything for herself and the nurses and I would do our best to help and give her our attention. She would always feel weird about nurses coming too close and always wanted me to do things for her but I knew when she had to have a clean and didnt mutter a word and just sat there silently I knew.

    The end was one night when she had a rough night hardly slept and she was very agitated, her breathing got so heavy it was like she was gasping for breath.. doctors told us she wouldnt wake up again and she was in a deep sleep. Then my world broke and she was gone. 

    I dont know if anything of the above has helped or just hearing about my experience will help, but nothing can prepare you. My mother was honestly my life and I feel so broken. I wish I had more time so please treasure your time with your mum and do everything you can for her. Dont be afraid to constantly bug the doctors about an update or advice because you are in your rights to do so. Treat every second as if its the last because understand you will never get this time back. 

    I didnt get any help from nurses or MacMillan but I have heard they are amazing. 

    I wish you nothing but the best and I am sorry for rambling on but I hope I have helped in some way or another. You are in my thoughts and prayers and I hope eveything gets easier for you.

    Take Care xxx 

  • Offline
    Hi Kelly Reading through your post and all of your questions and worries is exactly what I went through with my dad. He was diagnosed with stage four lung cancer which had spread to the brain. He underwent brain surgery chemo and radio but unfortunately the tumors on the brain returned and multiplied.. I searched the Internet and asked friends who work in hospitals for information on what to expect. My dad had a fall and from then on was bed ridden unable to control his bowels and stopped communicating. He slept probably 60-80% of the day and we would wake him for food and water. We were really obsessed with getting fluids and food into him and it would be very stressful as my dad's swallowing gradually got worse. We had to uses a thickener provided by the hospital to thicken water and we pureed his food.. In his last week he just refused to open his mouth and found it very hard to just swallow saliva. He started to cough alot and had a build up of mucus on his chest, the nurses tried to use a suction but it was too far down. To this day my mum and I believe he had water on the lungs from fluids we were giving him and although he would have died from the cancer we think he contracted pneumonia in the last few days. On the Tuesday night we stopped giving him any fluids, the doctors came and put him on a syringe driver of morphine and a relaxant. And a hydration drip under the skin. We Sat him up comfortably but His breathing worsened throughout the night and the next day the nurses turned off the hydration drip as they said it could flood his lungs. His face had turned bluish around his nose and he would pause in his breath, when the nurses came back they told us to lay him back and make him comfortable. I did ask how long could he go on for with this breathing and she said it could be hours or it could be a few days. But After 24 hours of being on a drip by that evening on the Thursday night he passed away peacefully. After reading through countless forums and posts on many websites and groups.. I would say eating and drinking is the first sign towards the end and then for my dad it was his breathing. I was so adamant I wanted to be by my dads side at the end but I was so scared of what to expect, would he have a seizure, would he be gasping for air, how will I react, who do we call, what do we do, all theses things going round in my head. I can honestly say my dad's passing was very peaceful.. And from what I have read of others experiences it is usually very peaceful. I was so scared I would not be by his side at the time, or I would be asleep in bed, or in another room etc but you will know roughly a few days before. My dad's decline from after his fall to his passing was about 2 months. And then from stopping food and fluid was about 2 days. It is exactly a month today I lost my dad and I am reliving the moment over and over, I am completely heartbroken and honestly am a changed person. A part of me left with him... I am just taking everyday as it comes and trying to take care of myself. All I can say to anyone who is going through this.. Say the things you want to now, hold hands, hug, listen to music, take photos. I constantly told my dad everything would be OK next week and to just rest, this may sound crazy but my dad was really scared of dying and we never talked about death, we aways remained positive. Take care, be strong, you are in my thoughts... Xxxx
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    Hi Kelly, Very sorry to hear what you and your mum are going through at the moment. Just wanted to give you my experience on the signs and symptoms of a patient nearing the end of life as it's fresh in my brain, my father passed away just a few days ago on the 14th and also had stage 4 lung cancer which had metastasised to various parts of his body. He was put into hospice at our local hospital less than a week before his death as he was not responding to last line treatment (in Australia and for his particular case, this was immunotherapy NIVOLUMAB). By that time, he needed assistance moving about, a very generous air flow with fans and windows open to his room when he did move (usually to the bathroom) and even then he could not muster the energy to shower himself. At this point he was already getting short bouts of hallucinations at times, but this could also have been from the morphine and other medication he was on. I think the main thing was that he was definitely less "there" than a few days previously. Perhaps a ratio of 50/50 to 80/20 he was previously. Then his mobility declined further, he barely left the bed. But was still eating and drinking. The not being "there" ratio continued to worsen. He would watch the TV and sometimes make comments but was mostly silent and his eyes wouldn't be in focus. The hallucinations began to get worse and he continued to often not be very responsive. About 4/5 days before he started to eat and drink less. About 3 days before, he started becoming incontinent with urination and whereas he could previously go by himself on the bed, he could no longer focus long enough and required assistance. The day after the doctors increased his dose of morphine and he began dozing off a lot more after that. Usually being more asleep than awake, which when he was, he was often again not "there" but would still look around and seemingly watch TV. At this point, he started having hallucinations about boarding a train and at one point said, "I'm going now". The day after, the doctors increased his morphine further as his breathing had relaxed but his heart was still working too hard. After this, with about a day and a half before his death - he was in a comatose state, not eating, not drinking. The doctors told us not to feed him anything as this could cause food to lodge in the lungs and lead to an infection. His body began to get easily clammy, being unable to thermoregulate and he exhibited signs of physical decomposition, I hate to say it, but you'd be able to tell by smell. He began exhibiting the "death rattle" breathing, which I can only compare to a noise similar to that of Darth Vader's mask in Star Wars. I've read online that when this type of breathing occurs, more often than not, the patient is acutely dying - maybe 2-3 days. This was true in my fathers case. Oddly enough, as he was being changed by the nurses a day and half later he awoke from this comatose state with almost frightening vitality in his eyes and quickly passed away after he saw us re-enter the room and we were at his side as he passed. On that day, just an hour or less before, I noticed he began overheating and his breathing more ragged as well. It wasn't easy being there the last few days but I'm very grateful I spent the nights there and got to be by his side when he went. I honestly never expected him to open his eyes again after that last dose of morphine. I hope my experience sends in time to help you recognise any signs your mother exhibits so that you can prepare, emotionally or just to be physically with her when she is close to crossing over. If you would like more information/signs I recommend googling 'the science of what it feels like to die', there is a great article by the Atlantic on it. I found that it was quite accurate and it certainly helped me with estimating the time frame for my dad. Stay strong and take care, Alison
  • Offline

    Hi kelly

    i know how you are feeling. My mum was diagnosed with lung cancer in August this year. They could not do a biopsy or treatment as too risky with her age being 94. I have had to fight for help all the way and now she is at end of life stages

    we have had three days and nights with no sleep and her wandering around hallucinating and having people in the house and now we are at the sleeping stage. The dr has been fantastic as she is at home but it was all put into prospective this week when I was given a prescription to get the drugs for a syringe driver

    watching your mother go through different stages is hard but I got told by the dr when I asked the question I will know and I will be ready for the final days and you will know 

    be strong and don’t be afraid to ask the questions it is the only way to understand. And everyone is different we come into the world different and we go out different

    be strong and spend as much time as possible letting her know how much you love her and how much she is lived

    i am lucky that I have mum at home so she is still involved in family life even if one foot this side and the other in her own world we just go with the flow not to distress her

    good luck with this journey and stay strong 

    sue xx

  • Offline in reply to RS00

    I totally agree with you, my mum went in 16 years ago to have a pilot removed a relatively straightforward opp they said, 20 weeks later she died with 5 infections that was 16 years ago on the 27 th my world changed that day and 16 years on its not much easier, my close friend is now having palliative care now on morphine which is why I found this post. Take care.

  • Offline in reply to PlanetEarthIsBlue

    I don’t know where to start, I literally came across this site and your post I just really connected with. I hadn’t seen my dad in 6 years after we fell out, he missed out on watching his grandchildren grow and has never met his great grandchildren. I was told over Christmas he had taken ill and it could be cancer. Yesterday I had a phone call to say he is in hospital and is receiving palletive care. He has days left to live, I went to see him and he’s so poorly thin and scared he looks nothing like the dad I new. Cancer is in his tummy bowels, and he is know longer drinking or eating, he has a tube taking the bowel matter away in to a bag, he has had his tummy pumped twice to get rid of the build up. After not seeing him for 6 years it’s heartbreaking that I have hours left with him! I’m going down to the hospital tonight once more and I know deep down it will be the last time I see him. I’m only 39 and just want to be snuggled up in his arms cancer is utterly heartbreaking x

  • Offline in reply to sandy2224

    Hi Sandy 

    Im so very sorry for you and your family :( everybody's situation is so different and heartbreaking. Depending on your relationship now, I would definitely take this moment to lay in ur dad's arms, tell him how much he means to you and all the things you want to say. Life is just so cruel sometimes :(:( 

    Thinking of you and and ur dad X

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