Palliative Care in Canberra – other people’s experiences

koalathebear 24 December 2010 26

We lost someone very, very dear to us on Tuesday. I have to confess that I was pretty underwhelmed by the quality of the palliative care received. My understanding was that palliative care is supposed to be medical care or treatment that concentrates on reducing the severity of disease symptoms rather than striving to halt, delay, or reverse progression of the disease itself or provide a cure. It’s supposed to bring comfort. From what I could see, palliative care seemed to largely be comprised of the medical staff directing the withdrawal of all forms of treatment except pain medication … i.e. “so sorry sorry sir, you’re going to die.” The psychological impact of that aside, you’d think that it was possible to at least deliver on the comfort side …

There were a lot of different arms of the palliative caregiving groups providing assurances of assistance and the promises were pretty amazing, but at the end, all I could see were connected/related agencies that didn’t communicate to one another as much as they should have, people promising to phone who never did, things falling between the cracks and the poor patient still trapped in a state of somewhat extremely undignified misery.

Oncology medical staff were pretty amazing across the board – I don’t have enough good things to say about the team at Zita Mary and radiology oncology over at Canberra Hospital but by the time we reached the end of the line in terms of treatment and the ‘pal team’ were supposed to take over – it was pretty horrific and traumatic all-round. It’s kind of sad that the brutality and agony of chemotherapy and radiotherapy paled into insignificance beside the rather poor administration and miscommunication that existed when there’s nowhere left to go except down …

I wasn’t unhappy with the team at Clare Holland – they were kind and compassionate – I think I’m still reeling with shock about how traumatic and uncomfortable the palliative care process was. Watching someone fight something as horrible as cancer is bad enough but watching the system exacerbate the situation is just … well I have no words ….

Does anyone have any better experiences to share so that my sorrow doesn’t turn me completely jaded and bitter about Canberra’s palliative care system?


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26 Responses to Palliative Care in Canberra – other people’s experiences
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Jean Jean 11:15 am 29 Aug 16

It is a horrible journey. It could be helped greatly by wise use of Homeopathy.
I pray that those who who really wish to heal reduce the side effects of radiotherapy and chemo by embracing what it can offer.
http://homeopathyplus.com/homeopathy-in-emergency-medicine/

http://www.ncbi.nlm.nih.gov/pubmed/27515878/
http://homeopathyplus.com/cancer-patients-improve-with-added-homeopathy/

scorpio63 scorpio63 8:45 am 18 Sep 12

You made the right choice at the time Milkman, I am now going to sign my kids in their twenties up for private health cover for their futures.

cleo cleo 1:48 am 18 Sep 12

If I had cancer, and got a death sentence, I would smoke dope to ease the pain, and stay at home to die if possible, I don’t smoke dope by the way, but at least it would ease the pain.
After seeing what my brother went through, the pain he suffered, he didn’t want to be taken to hospital to die, he was still able to walk around, looking like a skeleton, such a cruel and insidious disease.

kakosi kakosi 10:18 pm 17 Sep 12

milkman said :

Several years ago a family member had serious heart issues, and was treated in a major Sydney hospital as we were advised that ‘Canberra isn’t up to it’. Complications later also resulted in a trip to Sydney. Problems later meant we had to go to Canberra hospital for several days until the local medicos admitted they had no idea, at which point back to Sydney we went. The staff at the Sydney hospital diagnosed in less than an hour but by then it was too late. They were kind enough to keep him there for the few remaining days of his life, and looked after him very carefully.

My opinion of the Canberra medical system is not high.

I have to agree – diagnosis and treatment in Canberra Hospitals is hit and miss depending on which doctor and team you get. Would love to know which hospital in Sydney you went to?

As for palliative care, after speaking with “providers” I am a bit shocked to find it’s just a withdrawal of any medication aimed at keeping you alive (i.e. you get an infection and you don’t get antibiotics just pain killers) – basically it’s a very slow form of euthanasia.

With animals we allow vets to end suffering immediately, as humans we must die slowly and miserably. Where’s the morality in that?

milkman milkman 8:14 pm 17 Sep 12

Several years ago a family member had serious heart issues, and was treated in a major Sydney hospital as we were advised that ‘Canberra isn’t up to it’. Complications later also resulted in a trip to Sydney. Problems later meant we had to go to Canberra hospital for several days until the local medicos admitted they had no idea, at which point back to Sydney we went. The staff at the Sydney hospital diagnosed in less than an hour but by then it was too late. They were kind enough to keep him there for the few remaining days of his life, and looked after him very carefully.

My opinion of the Canberra medical system is not high.

scorpio63 scorpio63 6:41 pm 17 Sep 12

Palliative care…for anyone who is not in the advanced stages of cancer contemplating palliative care, I urge patients and/or their next of kin to be given the FULL rundown on palliative ‘care’ at the Canberra Hospital before any decision is made given that within a week (including a weekend) where no on call Doctor or Specialist is contactable, a loved one can be deceased within 7 days of palliative ‘care’ ie the terms should be ‘end of life no treatment’ with the exception of morphine.

For patients where there is hope (and where there is life, there is hope) please comprehend if one has not been involved in a loved one or friend being ill where palliative ‘care’ has been suggested or raised by a Doctor or Canberra Hospital staff; realise that any request by next of kin to staff on duty, for extra painkillers, a drip (fluid) or sub drip, an enema, changing clothing, a bedwash, anything that involves the patient’s health progressing; ALL will be refused by staff until one is able to get hold of the Specialist and talk one on one, which can take a few days if over a weekend.

I have just been through this process involving a loved one after palliative ‘care’ processes were not explained at all to the next of kin relative who was advised to give permission to end his parent’s life despite not having cancer nor any stroke.

The weekend arrived the day after admittance and his parent was near deceased two days after as a result of the Specialist not being reached. The staff’s hands were tied legally, the next of kin tried requesting a drip to cease dehydration and have the pain relief increased and the medication to stop his parent from drowning in acid and fluid refluxing continuously.

The response from staff: “we cannot do anything other than keep the morphine going until next week”. “Could I possibly get a drip put in”? “No, I am sorry, there is nothing that can be done until next week when you talk to the Specialist”. “By then my relative will be gone”, I said. “That is what palliative care is about”, the staff member responded.

My relative could not speak because he/she had not received fluids for 4 days and hoarse. The morphine drugged my relative yet no tests were conducted at all when she was admitted. This is a fact along with the fact that my relative had croaked on the second day to loved ones “get water, sit me up, get me out of here. All pleas were ignored by staff.

But then again, Ms Katy Gallagher, its all about money, money money isnt it? My relative has paid taxes for 50 years and was entitled to a few tests carried out during the first 48 hours of admittance, entitled to be given humane basic health treatment, NOT for the Specialist and Hospital system to talk around the next of kin into a decision (minus any tests) for end of life ‘support??’ treatment when my relative was only admitted into the Canberra Hospital for fluid on the heart and nothing else.

Do your job, after all you are getting paid a high wage Ms Gallagher paid by my relative over past years

JustThinking JustThinking 7:49 pm 02 Jan 11

You know what…I think any CARE is only defined by what the family members check on and contribute too..
SOOO often people just assume someone else will take care of their sick/elderly and never bother to visit or anything.
Losing someone dear to you would mean you were checking and had some idea of their care. IF you were checking then how could you be worried afterwards???

I-filed I-filed 9:28 am 26 Dec 10

Alas, the care probably ticked all the “efficiency” and “budget” boxes reported to Katie.

JustThinking JustThinking 3:40 pm 25 Dec 10

Hiya Jessica,
I agree with “”The palliative care process is also supposed to include some grief support for families. I know when someone close to me died from a medical mistake/complication I had a lot of trouble processing my grief and anger… so don’t be shy to ask for help working through your disappointment if necessary.””

My father died in 2003 after months of chemo/radiation. The hospital sent him home as being cured. He was OK,,,my sister went to take him back in for tests (the day later) but he had a cramp in his leg so she massaged it. He went to the toilet, brushed his hair and died.
The cramp was a clot (caused by treatment) and my sister loosened it during the massage,,it travelled through to his heart..(20 minutes before they were supposed to be at the Dr’s)

She was sooo devastated when she found out…She had no idea and noone had said anything to her. No warning, no Dr’s said anything,,,,none of us had any idea…

I do not blame her or the Dr’s…I think it was just dad’s time,(he had been talking about it for months,,which makes it easier)
I then began working (volunteer basis) in talking to other elderly people who kept talking about dying. Most told me they knew they were going to die,,,but their families wouldn’t talk about it with them…and they had things to tell people before they died.

My dad died because it was his time,,,,my sister thinks it was her fault as the DR’s didn’t explain to any of us what the “side effects” could be. Not anyones fault.
BUT I do agree that we need more help in the hospitals/nursing homes…

JessicaNumber JessicaNumber 1:44 pm 25 Dec 10

Unfortunately humans can make mistakes. Sometimes a policy or resource shortage can lead to decisions and outcomes that are less than ideal for the patient.

I used to work at Palliative Care Australia a few years back. We used to help people understand their rights and opportunities, supplied information about the meaning of palliative care, helped put people in touch with services they may not have known to request and of course worked hard on better policy, resources and research. If you feel you are falling through the cracks or don’t understand something it’s well worth calling them for some info and options.

The palliative care process is also supposed to include some grief support for families. I know when someone close to me died from a medical mistake/complication I had a lot of trouble processing my grief and anger… so don’t be shy to ask for help working through your disappointment if necessary.

Grumpy Old Fart Grumpy Old Fart 10:28 am 25 Dec 10

In October this year I lost my mother to cancer. She spent her last two weeks in Clare Holland house which without a doubt is one of the greatest assets of the ACT. Bear in mind that there are a whole lot of volunteers do a sterling job in support of the fulltime staff who have to deal with death every day. Sure there were a couple of hiccups in the way things ran but remember to every person with a relative in palliative care their relative is the most important person in the world.

Many things are happening in other rooms which may require more urgent attention and you would not be aware of them.

To anyone going through the experience of having a relative with terminal cancer at Clare Holland House you have my sympathy. Just remember that whether the staff are fulltime or volunteers they are saints. Merry Christmas to them I say.

koalathebear koalathebear 9:53 pm 24 Dec 10

I’m actually very relieved that some people have had positive experiences. I guess we were just very unlucky – in more ways than one. It was a very sobering experience for all concerned but I am extremely happy to hear that not everyone went through the same thing we did.

I think I was ‘spoiled’ by my experiences with the oncology staff – their ready smiles, their knowledge of each and every patient, their genuine concern and care, their responsiveness and their ability to empathise without looking fake. Seeing the way they treated my father was just incredibly heart-warming, then when we moved into the ‘jurisdiction’ of the palliative care regime, it was just an incredibly distressing and traumatic transition that felt very impersonal, ‘tick a box-y’ and bureaucratic by comparison.

Thanks very much to everyone for their kind words, it’s very much appreciated.

bd84 bd84 8:18 pm 24 Dec 10

If only euthanasia was an option, then these poor people who are suffering beyond any of our understanding could be put out of their misery.

Leinna Leinna 6:13 pm 24 Dec 10

I’m sorry for your loss. I happen to work in Radiation Oncology and if there is any feedback about how we could have delivered a better service for your dad (or you) feel free to send a message to the department (or via a PM to me if you want).

The staff in Pall Care at TCH are all wonderful people who try their hardest in a system that doesn’t always work. It would be nice to have a larger Clare Holland house or alternatively an inpatient team who manages palliative care at the hospital instead; however I think the trend is to close palliative care units in acute hospitals (from my experience in Sydney at least).

cranky cranky 5:43 pm 24 Dec 10

Shadow Boxer @ #6
+1

“Dad did not receive the care and respect from the people whose job it was to provide it.”

May I humbly suggest that the majority of the wonderful staff at palcare would hardly see this as a ‘job’. They have a calling which transcends simply earning a living.

merlin bodega merlin bodega 4:09 pm 24 Dec 10

Just sorry to hear that your experience has been so disappointing and that your Dad did not receive the care and respect from the people whose job it was to provide it. It’s a lesson for anyone facing the ordeal I guess. It’s just a shame that no-one appears ever to be accountable in the health system.

shadow boxer shadow boxer 2:36 pm 24 Dec 10

yeh, quite possibly, it was 10 years ago…

gun street girl gun street girl 2:27 pm 24 Dec 10

I am truly sorry you and your family – particularly your dear Dad – had a less than stellar experience with palliative care. I would agree with the sentiments of an earlier poster, in that feedback to the service itself is invaluable, and can be used in a productive manner (ie to highlight where the service is lacking, and to support moves to fund positive changes). There are some real gems working within the system, but they do need help, and the service itself does require improvement, without question.

koalathebear koalathebear 2:22 pm 24 Dec 10

shadow boxer – perhaps funding has gone down since then for pal care? Oncology services were excellent and those guys were just amazing …

koalathebear koalathebear 2:21 pm 24 Dec 10

The Clare Holland staff at the hospice itself were very kind and helpful and we thought that the environment was good. A lot of the ‘dissatisfaction’ as it has been referred to above did arise to some degree from the hospital wait before a bed at the hospice was available but much of it arose before then from when there was a bombardment of phone calls, visits and expressions of concern from various disparate members of various disparate ‘teams’ which appeared to have no central coordination point and didn’t seem to communicate. Someone would promise massages that didn’t come through, someone else would promise a help line to be phoned for access to 24 hour medical consultation – but when that help line was phoned, we were told to go to our GP etc etc etc … Sometimes it felt as though they all made initial contact because it was their job but the job didn’t seem to entail anything beyond the first contact because they were perhaps too busy or because they thought someone else was handling the situation.

I’m not blaming anyone. Bureaucratic procedures will always be like this and within such systems, there are those that truly care and those that are paid to care. You can really see who is who during crunch time. I’m fully appreciative of constraints imposed by limited funding, by different areas that don’t necessarily communicate but I do think it’s hard to expect a family who are looking after a terminally ill relative in his critical stages to remember exactly who does what, where. Also, I really don’t believe that caregivers should make promises and assurances of assistance to a dying man unless they mean it.

There were at least two who made a bunch of promises to phone and keep in touch and then never phoned again until a day or two after my father actually died by which time was far too late for anyone to help him … I appreciate that the system is flawed and that it’s no one else’s fault but all the ‘rationality’ in the world doesn’t help the fact that a dying man suffered more than he needed to in his final weeks. I’ll get over it one day I know but I’ll always know that a lot of my father’s final distress could have been avoided.

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