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# update post 19 Question about pallative care at home?
Sadly my grandfather has passed away


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#1 mum2jp

Posted 16 November 2012 - 08:16 PM

*Sorry this may be sensitive to some*

My grandfather has lung cancer. He is now at the stage wherehe is too weak for treatment and has been referred from his oncologist to a palliativecare team. The nurse has been coming to the house for a couple of weeks but hehad to wait until today to actually see the doctor. The nurse has recommended oxygenfor him at home as his oxygen levels are low when monitored. So we thoughttoday would be a medication review (pain meds mostly) and having the oxygen organized.

Anyway Mum went with him and my grandmother to the appointmenttoday and said she found the doctor to be really awful. He basically said thatthey don’t just give oxygen to anybody because you can only have it free for 3months so he would need to speak to his cancer doctor about how much ‘time’ hethinks he has. Mum told him that paying for it after the 3 months was not anissue. He then asked Mum and my Grandmother in front of my Grandfather (as ifhe wasn’t there) if they would be putting him into palliative care. When mumtold him the plan was to care for him at home he sighed and told her that itwouldn’t be that easy they will need two people full time to care for him. So basicallyNOTHING got done today. So my question is who makes the decisions about what heneeds? The home nurse has recommended oxygen; he needs it to be comfortable.Can this be refused by the doctor? If they won’t provide him with oxygen athome they are basically forcing him to go into hospital.

I know this is an upsetting topic especially for thosehaving been through it but if anyone would be willing to share experiences ofhaving palliative care at home and has any advice about dealing with the systemthat would be much appreciated.

Edited by mum2jp, 30 November 2012 - 10:41 PM.


#2 adl

Posted 16 November 2012 - 08:23 PM

You don't mention where you are? We had my Dad at home and a friend nursed him privately for us

My GF was a palliative care nurse through Western Area Health services, in Sydney, its divided into geographical areas  ...she had patients referred to her , so I think you call the Health Services in your area but surely his oncologist can refer you to these services?

I am sorry to hear about your grandfather and hope you sort it  out so he may enjoy his remaining  in days in peace and comfort at home

#3 Feral Becky

Posted 16 November 2012 - 08:29 PM

Hi OP, I also have a parent with cancer and I am also a nurse.

Recently there have been huge changes about oxygen and a lot of health staff have not kept up. Respiratory physicians are downright against indiscriminate use of  oxygen and accept oxygen sats in the mid 80's and even then at a low dose, like 1 litre nasal prongs.
Nurses are the worst and we think everything would be fixed with a good blast of oxygen.
Recently I have had to rethink on patients with chest pain, if their oxygen sats are OK, they don't get oxygen , but this is VERY slow to catch on.

Doctors trump nurses in decisions and many oncologist/palliative care docs can seem very cold. I guess most of them have zoned out as a coping mechanism.They are human though under all the veneer.

Pain relief is the main goal not really oxygen.

PM me if you need.

Edited by LindsayMK, 16 November 2012 - 08:40 PM.


#4 mum2jp

Posted 16 November 2012 - 08:30 PM

We are in Sydney. He has been having a nurse come out but she said the doctor would have to order the oxygen as the doctor is the one who review meds ect. He has moved house moving to another area so after today Grandma and mum are thinking about asking for a transfer of his care to the hospital closest to them. It will save them traveling for appointments too.

#5 Feral Becky

Posted 16 November 2012 - 08:35 PM

A hospice for palliative care is a good idea.

#6 mum850

Posted 16 November 2012 - 08:48 PM

QUOTE (mum2jp @ 16/11/2012, 09:30 PM) <{POST_SNAPBACK}>
We are in Sydney. He has been having a nurse come out but she said the doctor would have to order the oxygen as the doctor is the one who review meds ect. He has moved house moving to another area so after today Grandma and mum are thinking about asking for a transfer of his care to the hospital closest to them. It will save them traveling for appointments too.


Hi mum2p

- ask the home palliative care service if then can lend you a concentrator
- ask them or the pharmacy if you can hire a concentrator
- get him admitted to your local palliative care facility for a brief symptom management admission, they will arrange appropriate oxygen on discharge
-ask your nurse to take it to his//her boss to take it "upstairs"
- go higher up to the hospital.network that rejected your request.

You have not received a good service from this doctor and not all pall doctors are like this. Your request to get O2 to care for your grandfather at home is not only reasonable but should be applauded and supported.

also, politely, put a complaint in writing.

#7 pukeko walking

Posted 16 November 2012 - 08:50 PM

Hi OP, I used to work occasionally in community palliative care. It's important to find out if the doctor was palliative care specialist. Were they actually part of the same team that the palliative care nurse is in, or were they a medical specialist or gp? I would try to clarify this as sometimes medical doctors are not as up to date with palliative care guidelines as those who specifically work in that area.

If they were a palliative care specialist I would try to discuss with your Grandad's nurse what alternatives were planned to address breathlesness (such as morphine etc), and whether these alternatives need to be discussed further. Talk with the palliative care nurse. They will know which avenue to take to ensure your Grandad has the most comfortable care - and if they firmly believed he needed oxygen to be comfortable, they will know who to approach next.

best wishes

#8 Chchgirl

Posted 16 November 2012 - 08:52 PM

My dh passed away in July, and only started going downhill in june. I had palliative care nurses come around regularly, but I can't tell you about oxygen as we didn't use it at home. I can tell you the oncologist and palliative care doctors were through Liverpool hospital in Sydney and were awesome.

The palliative care team was through Braeside at Wetherill park and I pretty much had total input and choice with everything. I ended up getting a bed for him in hospital as it became too hard at home, and he only was in hospital three days before passing. I was very fortunate to have the choice of all the decisions myself.

I don't mind answering questions at all, I wish someone was there to tell me all this..

Edited by Chchgirl, 16 November 2012 - 08:52 PM.


#9 MrsLexiK

Posted 16 November 2012 - 08:59 PM

QUOTE (LindsayMK @ 16/11/2012, 09:35 PM) <{POST_SNAPBACK}>
A hospice for palliative care is a good idea.

As someone who has gone through this recently I can see where the dr was coming from. It is 100 times harder then you think it is going to be, as hard as going to palliative care to visit every day is, it is nothing compared to what living with it 24/7 is.

We couldn't get oxygen for my relative we just had to call an ambulance if he needed it, it happened a few times, sometimes he would be admitted for a few days other times he would be let out almost straight away. We had nurses come around every x amount of days to just check on things. But you need at least 2 people 24/7 there. You need to ask yourself if your grandad fell would your mum and grandma be able to help, what if only one is there could they do it by themselves?

I am sorry you guys are going through this.

#10 mum2jp

Posted 16 November 2012 - 09:00 PM

Thanks for the replies. Passing everything onto mum as she has been going to appointments with them. If possible we would like to organise what he needs without him having a stay in hospital. He and grandma are very clear he wants to spend his time at home with her. They are scared if he goes into hospital he won't come out. The palliative doctor they saw today will see him again after he reviews with the cancer team. I think they are hoping if they get his care transferred to their local hospital where they now live now they might be lucky and get a more suitable palliative doctor.

#11 mum850

Posted 16 November 2012 - 09:07 PM

It IS possible. Sometimes, it might not be possible right at the end but that's often due to carer exhaustion etc rather than stupid reasons like not being able to get oxygen that is clearly  required.
You will be able to get it, it;s just a matter of getting to the right people.
It sounds like local hospital would be a good idea, do they have a pall care team?

#12 meljbau

Posted 17 November 2012 - 10:15 AM

My MIL had lung cancer and she "qualified" for oxygen through some testing she did, but the irony was that she was too weak to push the cylinder around so she couldn't really use it unless she didn't want to move at all. She didn't qualify for the other style of oxygen with longer leads attached to a box, so we paid for that ourselves for her. From memory we just rang the company up and organised it. My mum, who doesn't have cancer, but was admitted to intensive care interstate after an asthma attack, flew home with oxygen. That was a condition of the airline, but we organised that privately too, so there are avenues for getting it.

I'm sorry you're getting the run-around. You shouldn't have to worry about things like this.

#13 Whatnow?!

Posted 17 November 2012 - 10:29 AM

There is an outstanding palliative care hospital at Wahroonga in Sydney. It's called Neringah. My mum passed away there after a week long stay. She had advanced lung cancer. It was horrific watching her go, but the nurses were truly angels on earth.

SO sorry you're going through this. I wouldn't have been able to cope at home. Pain relief was on tap for her there and that's the most important thing with palliative care...

#14 madmother

Posted 17 November 2012 - 10:59 AM

As someone who has now cared for three people I have lost, honestly... it truly depends on each situation.

My Dad was only in hospital a few days before he passed. My Mum and I, and the amazing palliative team the doctor put in place were able to manage him at home until then. But it was hard (especially on my Mum as primary carer, she actually suffered a minor stroke from it), and we were blessed in that he was an incredibly strong person who only needed major pain relief in the very last period of the cancer.

My honorary grandfather, who had suffered a stroke, gone through rehab and came home. It was only a few weeks as he then developed pneumonia and was unable to come home (went into care). I was unmarried, no kids, and fit. It nearly wiped me out - little sleep, physically intense, completely draining as much as I loved him. He had no blood family, so I was it. Luckily for me HE chose to sign papers to go into an aged care facility because HE realised (and was mentally 100% before the pneumonia) it was not a long term solution and that I would die before giving up.

My Mum.

Only you and your family can judge if you can cope. Take what you think it will be and times it by 100 and you may be close to what the reality will be.

But it has been and can be done in some situations. Thinking of you.  sad.gif

#15 Chchgirl

Posted 17 November 2012 - 09:21 PM

QUOTE (LindsayMK @ 16/11/2012, 09:35 PM) <{POST_SNAPBACK}>
A hospice for palliative care is a good idea.


I do agree, it was the hardest six weeks of my life, physically exhausting and heartbreaking as well..I was relieved when he went to hospital ..

#16 Feralishous

Posted 17 November 2012 - 11:15 PM

i cared for MIL for the last 6 months of her life.
we had silver chain come 3 times a week, to monitor meds (she had iv pain relief at the end) and reassess. She was on oxygen for most of that 6 months, due to a collapsed lung. I did all her personal care and most meds (she had mainly pain relief and blood thinners, plus antibiotics) plus her supplements, and DH cooked and cleaned, while FIL worked the occasional day (hes a doctor and runs two practices) and BIL helped with meds and provided company and respite while I had a break (had bad morning sickness for 4 of the 6 months we lived there)
Everyone shared the toddler wrangling.
It was really hard, and has certainly made me rethink changing careers to nursing/midwifery, but Im glad we had the time with her. We didnt get along for 11 years, but certainly grew close during those dawn chats, and im so glad her children and grandchildren had that time with her

#17 ozzyhelen

Posted 17 November 2012 - 11:40 PM

Hi, this is awful for your family, I am so sorry.  I am a palliative care nurse but most experience is inpatient palliative care, I am also not in NSW so what is allowed might be different.  If your grandad is up to it and you have not done this already, it might be worth suggesting he fills out an Advanced Health Directive.  He can put down his wishes in regards to his medical treatment, this includes wishes to be at home.  Although there are situations where this is not possible if it is documented in this way the health professionals have to follow his wishes...it is a legal document.  I also agree it can be incredibly hard to care for someone at home, but it is not impossible and with the right services in place your family hopefully can manage.  If things do get hard, he can go into an inpatient facility (hospice) for symptom management/respite and usually this would be for 1 - 2 weeks.  Services in the home would be reviewed and then he can go home again.  Most hospices do not have the ability to keep people long term (months and months at a time).  I do think if this doctor did not answer your questions or put your mind at ease you should organise a consultation with another doctor.  I also agree if they are not palliative specialists they do not always understand all the rules and differences in management of a palliative patient.  Good luck in getting the appropriate information and care and feel free to message me if you wish to.

#18 mum2jp

Posted 30 November 2012 - 10:38 PM

Today sadly my beautiful grandfather passed away. Having spent all afternoon at the hospital sitting with him and the family i now am home wide awake and feeling very numb. I know he was very ill but it still seems to have come as a surprise. We didn't get to see him today before he passed as he went downhill very quickly by the time my grandmother (who thankfully was with him to hold his hand) called everyone and we made our way to the hospital he had passed. He was only in hosptial for two days due to a distended bladder and got to spend most of his time at home. He just looked at peace and he is no longer in any pain, bless him he wanted to stay but his body just couldn't take anymore.

Thank you for all your advice.


Edited by mum2jp, 01 December 2012 - 10:11 PM.


#19 bakesgirls

Posted 30 November 2012 - 11:17 PM

I am so very sorry to hear about the passing of your grandfather mum2jp. Take care of yourself at this difficult time.

#20 Chchgirl

Posted 21 December 2012 - 09:51 PM

QUOTE (Blossom77 @ 17/11/2012, 11:34 AM) <{POST_SNAPBACK}>
Hi, I am sorry this is happening for your family.  We cared for my dad at home until his death and I just wanted to suggest that you get as much info as possible on hospice arrangements, just because a) things change and b) respite may be essential even if permanent care is not what your family wants to do.

We didn't use a hospice but I wouldn't sugarcoat how hard it is to care for a dying person around the clock.  It nearly broke us and still remains the hardest thing I've ever done.  In comparison, working 16 hour days or caring for a baby are pleasant, low-stress activities.  Respite care really would have helped, just so we could have a tiny break, but we didn't know about those services until afterwards.  Also sometimes the views of the dying person change and some people prefer to go into care as their condition worsens despite having negative feelings about it initially.  So I wouldn't shut that door yet.

I hope your mum and grandma cope ok, it is hard and I am sure they are doing a great job.


I agree, it was the toughest thing by far I have done in my 45 years and hope never to again..

My dh also chose when to go to palliative care.

#21 Chchgirl

Posted 21 December 2012 - 09:52 PM

My condolences also xx


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