Palliative Care in Canberra - other people's experiences

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.

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.

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.

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).

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.

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.

yeh, quite possibly, it was 10 years ago…

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.

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

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.

It’s going back a while but I found my contact with palliative carers in the ACT to be nothing short of sensational.

If there is a god i’m sure he reserves a special place in heaven for these people.

I’m very sorry for your loss. If you’re unhappy with the state of palliative care in the ACT, write the Health Minister – gallagher@act.gov.au or the shadow Health Minister – hanson@parliament.act.gov.au

All the best for this Christmas.

I’m not really certain whether your dissatisfaction with the palliative care services stemmed from your experience at Clare Holland House, or within the hospital system whilst waiting for a bed at the former. I’m not sure how many people are aware of the fact that an on-site “pall care team” (comprising of full-time palliative care doctors, nurses and the like) does not exist in any of the hospitals of the ACT. Whilst there are dedicated palliative care nurses at Calvary and TCH, there are no on site doctors (only one who is responsible for visiting all hospital sites in the ACT, as well as overseeing the hospice – quite an onerous role). As such, palliative care do not have their own inpatients in any of the hospitals – as in, they don’t take over formal care until the patient is transferred to CHH – until that point, they are involved on the periphery of care as outside consultants only (if indeed they are invited to participate by the treating team in the first place). Obviously, it doesn’t take a lot for such a limited consult-only service to become stretched, and the potential for miscommunication between treating team and transient consult service is indeed great. I’m certainly not trying to deny, underplay or justify your recent experiences (for which I am sorry), but I suspect most people believe palliative care is better represented in the hospital system than it is in reality.

I am also very sorry for your loss. After a year of palative treatment and a fairly sudden but predicted decline my family lost our young son in 2009. The team at Clare Holland couldn’t have provided more at home support and comfort to my family.

I found that there were some practices/people I dealt with that I wasn’t always happy with but the system isn’t perfect – sadly it was when we were at a point in time where our emotions were at breaking point. Any failings, large or small, of a system in those circumstances are always heightened.

Time doesn’t heal all wounds but it does allow you to forgive and forget any other issues you might have had at the time. I am sure that the staff at Clare Holland will no doubt be receptive to any questions or issues you may have.

Thanks for your kind words.

Basically a lot of miscommunication. Commitments to certain services that didn’t exist. Unfamiliarity about procedures and deliverables between members of the same team … Area 1 would say that Area 2 would be able to provide certain support services that it assumed area 2 could provide but didn’t. There was a lot of persuasive talk but very little follow-through in terms of support services and it led to disappointment and a great deal of physical and emotional distress.

Except for the one day that we were finally able to get at Clare Holland after a long wait – there was very little in the area of ‘peace and comfort’ that I was expecting from palliative care. It seemed quite disorganised. It’s really a very sad thing when the funeral home staff are far more organised, compassionate and on the ball than the palliative care team ever was …

Im terribly sorry for your loss, I have been through a similar experience with a family member in the past. It is horrific, especially when it all reaches an end at this time of year.

I have to ask though, what is your post about? You say “I think I’m still reeling with shock about how traumatic and uncomfortable the palliative care process was.”

In what way? You dont say what exactly has you so bemused – or have i missed something?