My dad was diagnosed with advanced primary liver cancer in June of 2012. He was 80. He had survived end stage liver disease secondary to hep c and cirrhosis about 9 years prior. I live in Utah, he in Southern Ca. He was my best friend and only support. My sister has Alzheimer's at the age of 49. My dad and I spoke a minimum of twice a day, and I listened to him struggle with all of the aspects of liver cancer. A doctor had told him that, without a liver biopsy, they couldn't say it was cancer for sure, even though his AFP was over 10,000 and he had multiple large nodules in his liver, so he never believed he was dying. I was expecting it to look like ESLD, with ascites, jaundice and confusion, but he never developed ascites. He lost some of his bowel control, had multiple visits to the E.D. because he couldn't urinate and his bladder would become so distended that he was suffering severely, but he was confused enough that he didn't recognize that his inability to urinate was causing it. He had a TURP which helped some. He also had bilat 4+ pitting edema to feet and legs, severe jaundice, facial edema, severe confusion and weakness, lack of appetite, atrial flutter and his liver could be palpated in his LLQ.
Anyway, he wanted to be with me more than anything in the world. Wanted to see the mountains, wanted out of Long Beach. I had promised him, 9 years ago, that I would never let him suffer. I went thru months of worry because he was confused and getting lost and couldn't figure out how to use his phone anymore. I packed up my 2 kids, dog and cats and moved to So Cal to take care of him. I planned on staying, but ended up moving back home. I'm a single mom, so this was no easy task.
Okay, now to the part that has me consumed with guilt.
He came to live with me so I could care for him. He would be up in the night confused, fell once and I found him on the floor by the bathroom. His urine was rust colored. He was confused but seemed content. I took him to the mountains and helped him walk down to the lake. He didn't have the physical or mental strength to really enjoy it, but we did it.
On the 3rd night that he was with me, he woke me up complaining of severe epigastric pain. He was on hospice care at that point, but wanted a shot of vodka, first time he'd asked for that in almost 10 years. I gave him one but it didn't relieve the pain. I started him on the prescribed dose of 2.5 mg's Roxanol q4 hours. I gave him the first dose with no relief. Side note...he had stopped eating or drinking coffee the day before and got in bed and didn't get out. Anyway, I gave him more. That didn't help. My dad never, ever complained of pain, so I was scared. I knew he had esophageal varicies, so I was scared that he was going to bleed out or his liver capsule would burst-I was told that a lot of patients with this form of cancer die from catastrophic bleeding events and I didn't want him to die afraid. He fell into a deep sleep, then woke up asking for water. I gave him some, got him up on his elbow, had him turn his head and tilted the straw down towards his tongue. He took a big sip, but when he went to swallow, it all went in his lungs. He turned blue and coughed so hard that he went completely unresponsive. I have never been so scared in my life. I had no one with me...no family or friends. Just me and my dad. I knew at that point, he either coughed so hard he had a stroke or something terrible had happened. I sat by his bedside for the next 20 hours and listened to him moan a soft moan on exhalation, he sounded very wet, I suctioned him when it he needed it, then positioned him on his side. He looked very comfortable but was having trouble breathing. I knew there was no going back at this point, so I gave him lots of Roxanol. I probably gave him 20 mg q4 because I was terrified he'd wake up in pain or worse due to his aspiration. To be honest, i'm not sure what I was doing anymore. He did die peacefully, meaning he never regained any consciousness. He did however, roll onto his back with his eyes wide open and reach out in front of him as if to grasp something, then back to unresponsive for a few hours before he passed away in my arms. His last breaths were small gasps...no air movement. I watched his pulse in his wrist go into a fast arrhythmia, then stop.
I'm coming up on the one year anniversary of his death, and I am struggling with my decision to be his hospice nurse. I wanted his death to be peaceful, with his favorite music playing, and it was, but he aspirated in my care, and I gave him morphine, knowing I was brining the end sooner because it was coming anyway. I'm looking for support because I can't continue to feel like I killed him. I know he was going to die anyway, but I feel like I brought death sooner. Maybe that was a good thing, idk. Was it my decision to make? It is affecting me deeply and profoundly.
Please don't say anything cruel. But I want to know anyone's thoughts on this.
Specializes in Vents, Telemetry, Home Care, Home infusion.
Wearing my hospice hat, had similar experiences with patients and family members. Your overall caring and desire for pain free existence is what matered most. THe first year anniversary is roughest as you keep relieving "what if"s on your mind.
Many Hospices have bereavement support groups open to the public (didn't have to have services from group).
Specializes in CCU, SICU, CVSICU, Precepting & Teaching.
I'm so sorry for your loss. I'm not a hospice nurse, I have no advice to give in that regard. I am a daughter of a father who died five years ago last week. The anniversary is a big deal. Go and talk to someone about this and perhaps they can help you to resolve some of your feelings. Your work may have counseling available, or perhaps your primary care provider can refer you to someone. It helps.
You did what you promised for your father; you brought him to live with you and you were at his side when he needed it most. Many of us SAY we'll do those things, but you actually DID them. What a wonderful gift you gave him! Please, when you think of his last hours, think about the gift you gave him and not about the negatives and the "What ifs." You know, as we all do, that the "what ifs" could have been so much worse.
I'm a new RN-I changed careers as a way of somehow being able to give back to others for what I was unable to do for my parents. It was 6 years ago (yesterday) that my dad passed and today is every bit as rough for me as it was then.
It seems to me that you did everything that you knew to do for him and he got the peace of being with you rather than an ECF. You tried to make the best of what you could do and I don't know there was anything mroe you could have possibly done other than being there with him.
I would have done the same thing. I honestly would have rather my father passed with me instead of some other nurse who may or may not been there for him like a daughter would have been.
Many experts believe that giving morphine at the end of life to relieve symptoms does not hasten death. Being a hospice nurse, I also feel that it does not hasten death, as I have experienced first hand people who have taken it and not taken it, and end of life is always different for each person and the use or absence of morphine has never played a role in when the pt died in my opinion. 20mg in four hours is also a small dose in my experience that is very very unlikely to hasten death. If it brought about comfort while he died that is wonderful, but I often see people taking that much and much much more per hour near the end hours of their life and some have lived for hours and some have lived on for weeks, it is used to control symptoms such as pain and discomfort which can increase when a person is near death, and morphine is one of those drugs that has no limit to how much can be given as long as the pt is symptomatic.
I feel you did exactly the right thing and did not hasten your fathers death by even one minute. What he went though is very common for many people at the end of life. What matters most is that he was able to die in the comfort of home, with his family instead of in a hospital surrounded by strangers. Your local hospice center should have free groups or individual counseling for you to work though this.
I went through this in December. My dad had colon cancer with mets to the liver and lungs. He went through summer of chemo and then spiraled down starting in November. He was seeing an oncologist where I work. On December 10th she told us that he may have 3 weeks left. Then she drew his blood. That night at work I look at his lab levels and his was in kidney failure, his potassium was high, WBC's very high, he was not going to make the weekend. He was a big cardiac patient too, so the postassium level would kill him first.
My sisters left me with him the last 48 hours. He asked me the "nurse" not to let him suffer when it came time. So my dad was already standing at the gates of heaven...but I did give him extra doses of his medications to help him along. He was never going to be ok again, but I sometimes feel this sense of guilt also. But we have to remember they were never going to be "OK", never going to have quality life..they could have had a quantity, a few more days, but no quality. But I do know the guild that you speak of, I feel it too. But I am at peace knowing that he went out peacefully, there was nothing I could do to save him.
Hugs OP. First of all, I am very sorry for your loss. I can tell from your post that you loved Dad dearly.
He had a hard time protecting his airway at the end. That happens. He could just as easily have fallen at a SNF as at home. He needed that morphine. You did not hasten his death by giving it to him; death was coming. The morphine didn't kill him; the cancer killed him. You gave him the amount needed based on his symptoms--what any hospice, hospital, or SNF nurse would have done. Hear me clearly--you did what he needed you to do.
He died in the arms of his beloved daughter. You gave him a wonderful gift.
My dad was diagnosed with advanced primary liver cancer in June of 2012. He was 80.... I probably gave him 20 mg q4 because I was terrified he'd wake up in pain or worse due to his aspiration. To be honest, i'm not sure what I was doing anymore. He did die peacefully, meaning he never regained any consciousness. He did however, roll onto his back with his eyes wide open and reach out in front of him as if to grasp something, then back to unresponsive for a few hours before he passed away in my arms. His last breaths were small gasps...no air movement. I watched his pulse in his wrist go into a fast arrhythmia, then stop. I'm coming up on the one year anniversary of his death, and I am struggling with my decision to be his hospice nurse. I wanted his death to be peaceful, with his favorite music playing, and it was, but he aspirated in my care, and I gave him morphine, knowing I was brining the end sooner because it was coming anyway. I'm looking for support because I can't continue to feel like I killed him. I know he was going to die anyway, but I feel like I brought death sooner. Maybe that was a good thing, idk. Was it my decision to make? It is affecting me deeply and profoundly. Please don't say anything cruel. But I want to know anyone's thoughts on this. thank you.
These are images that will be burned into your mind's eye forever. I know. I know.
"I killed my dad." Almost six years later and I still feel like that. I stuffed morphine into his dear body until it "killed" him.
It was a horrible responsibility.
Just know someone out there "gets" it, and no one that has not walked that road can fully understand...it's the sounds, the helplessness, the gurgling sighs, the images, oh, those damnable, brutal images.
Sweetheart, it gets better. And, yes, you did the right thing, even if it was the most awful thing ever.
NRSKarenRN, BSN, RN
10 Articles; 19,198 Posts
Wearing my hospice hat, had similar experiences with patients and family members. Your overall caring and desire for pain free existence is what matered most. THe first year anniversary is roughest as you keep relieving "what if"s on your mind.
Many Hospices have bereavement support groups open to the public (didn't have to have services from group).
Check out these resources:
[h=3]GriefShare: Grief Recovery Support Groups[/h][h=3]Coping with Grief and Loss: Support for Grieving and Bereavement[/h][h=3]GriefNet.org - Grace Happens[/h][h=3]Bereavement Support Group - DailyStrength[/h]