Palliative care doctors and nurses

[maria69]

Hi all,

my dad has advanced prostate cancer. Two months ago, he essentially went from working, driving etc... to not being able to walk properly, slurred speech and breathless. He had already been on palliative care and the meds were working well in keeping his life ‘normal’. 

In any case, we then went back to hospital and his medication was readjusted so that he would be out of pain, and we eliminated the drug that was making him sound drunk, confused and had him seeing things that weren’t there. 

The palliative doctor was been reluctant to give him any blood at first, but about a 6 weeks ago the doctor finally gave him some blood and it really made him feel better,

The issue is that the benefits of the blood transfusions only last 2 weeks or so, and he has had more transfusions since. All of which improve his life a little.

As the cancer is advancing, the doctor is now telling us that he doesn’t want to give anymore blood as it is a precious resource and my father isn’t really benefiting from them.... but I can see the difference, he’s stronger and can even go for a walk. 

To top it all off, my father suddenly lost his hearing ... This happened overnight. The palliative doc just said nothing we can do even if he didn’t look in dad’s ear.  The hearing loss is making him go crazy... this is possibly worse than seeing him in pain, he can’t hear the TV and no help was offered, not even a suggestion. We placed my mum’s hearing aid in his ears and can hear with them. After much research on the Internet, Hearing Australia will come and give him a device that will help him hear .....

I’m just wondering if anyone else has come across this ‘it’s not worth it’ attitude from palliative care.... I mean my father is still here... he eats, drinks, reads... he is still with us... why make him suffer? 

sorry for the long post, I suppose I’m perplexed at the attitude the palliative care are giving us.

[Budgie]

Hi maria69,

I understand how you feel, but I can also understand the doc saying 'no' to more blood transfusions for your dad.
Blood IS a very limited resource, unfortunately.
May I ask how old your father is? If the cancer is still progressing, the doc may not have much hope for your father lasting too much longer, & probably feels the blood could be put aside for someone who is younger & can receive more benefit from it than your father.
I am very sorry if I am sounding blunt, & like I don't care. I do care & I understand exactly what you mean. Why should your father have his right to life taken from him & given to someone else? What makes one person's life any more valuable than another's?
I suppose it's because, as horrible as it may be, your father is probably going to succumb to the cancer, regardless of how many blood transfusions he is given. Whereas, someone else may live another 50 years from the bloods that could have been given to your dad.
Try to understand that sometimes doctors are put in situations where they have to make a choice between two peoples lives....Who will society benefit from the most by receiving the blood? That is the horrible choice some doctors have to make.

I wish your father all the best maria69.

Budgie

[maria69]

Hi Budgie,

thanks so much for your reply. My dad is 75. He has been battling cancer for the past 13 years. He was cancer free for 10 and then the last two years, he’s been through chemo, with some success and then about 5 months ago, he was given 6 months to live as there were no more treatment options.

We understand about the blood, and they don’t give him too much, just enough for a basic top up, and they do make him feel so much better. It’s just scary knowing that maintaining this level of ‘health’ could be taken away, and my dad knows it. He keeps saying...I don’t think they’ll give me anymore blood.... and this his causing him anxiety.

To top it all off, he all of a sudden lost his hearing...I mean overnight! He is significantly deaf. Palliative doc and nurses just didn’t give us any ideas or ways to help...as this too has now caused him to be so sad.... I had to be provocative and act fast to get him his hearing back. Thanks to the amazing people at Hearing Australia, they promptly organised a headset and voice amplifier and quickly tested his ears for a hearing aid ( I hope he makes it to receive them). The palliative doctor and nurse had said there is nothing we can do for his hearing.... but there was. His home visit palliative nurse said  that as carers, we do need to be proactive in ensuring their end of life journey is ‘calm’...yes there are drugs to confuse them....but just before we get the patient to that point, they need to know that their life still counts and not be treated like ..‘ a dead person’ ...like you no longer matter to society..... it’s just a shocking realisation for me. I will continue to be vigilant with doctor advice and advocate for him ..... my dad would have done it for us. 

[Budgie]

It would have been very scary for him to suddenly loose his hearing. I am glad Hearing Australia have come to the rescue for him, & I hope he gets the aid soon. I do find it strange the palliative team didn't give you options. They seem to not want to help your father improve, but push him towards the end. I do understand how you feel. My palliative team are very different, very helpful.

I don't listen to doctors when they give a time line. It has SO much to do with the attitude of the patient, how much fight they have in them. I hope your father has a fighting attitude.
Keep your chin up maria69.

Regards
Budgie

[Patches]

On Friday last week I was offered by palliative care nurse to have my husband come home from hospital under program called ‘Palliative care at home’ and was explained this means hospital bed is provided to home for 2 weeks at no cost to me and I would receive support from palliative care nurses 3 different times during each day for 2 weeks.  I accepted this offer and hospital bed arrived on Tuesday.

my husband came home via ambulance on Tuesday afternoon.  I didn’t even get a phone call that day from a palliative care nurse.  Mid afternoon on Wednesday a palliative care at homenurse came to home and did provide great assistance in a very calming nature as my husband was discharged from oncology ward even though he was constipated.  Nurse was here for over 1 hr in the bedroom assisting to ‘get things moving’.  He left here after 4pm but that was only nurse I had any contact with or from for entire day.  About 1pm 2 nurses came to my home saying they are the morning shift of nurses and are happy to get my husband a shower,  he was still quite exhausted from the trauma of day before he declined the offer.  No other palliative care nurse contacted or visited yesterday.  Arrangement was made for 2 nurses to be here approx 9am this morning to get my husband a shower.  1 nurse finally arrived this morning about 10:15am.  I am now waiting to see if I have a visit or phone call during the day.  We are supposed to nurses come at 3 different times each day and this has only happened once each day so far.  Very disappointing 

[Traci-Renee]

Patches, is there anyone you can call?  That sounds crazy, that they aren’t helping you out more.  They don’t sound very organized.  Maybe it’s bc of this virus outbreak.  But of course they should have told you so, instead of you wondering if they are going to show or not.  I’m so sorry you are being treated this way.  I would definitely call and ask what is going on.  

[Patches]

We have been told that ‘morning shift’ nurses will come each day  ...... they are arriving any where from 8:30am to 2pm and have told me it depends on needs of each person.  We get phone call from afternoon shift where they verbally ask few questions.  We do not receive any contact from night shift nurses as they start phoning after 10pm.  

2of the nurses are wonderful.  One took the time to explain the benefits and full procedure of inserting needle into my husbands arm which stays there permanently and is used if he needs to be given injection.

[Traci-Renee]

Patches, I’m glad you like two of the nurses.  I haven’t been on in awhile.  How is your husband doing?  How are you doing?  My thoughts and prayers are with you both. ❤️

[Traci-Renee]

Hi Patches, I know you have your hands and mind full right now, but please know I am thinking and praying for you and your husband.  ❤️🙏🏻

[Traci-Renee]

Hi Everyone, Please know I am thinking of everyone who is fighting Cancer and Caregivers and Families during this crazy Coronavirus scare.  Please all stay safe and Healthy.  Your all in my thoughts and prayers.  Like fighting cancer wasn’t enough for our dear loved ones or yourself, now this.  We thought cancer changed our worlds, now look at us.  Most importantly please stay safe in this crazy world we live in. Take care and please keep in touch.  ❤️