Palliative Care : Hopes for 2018

As the year closes, we look forward to new beginnings, and hope for a brighter future.  We have dreams, plans and challenges.

We hope for a better fairer world despite the evidence that the world is becoming more dishonest, unjust and  unequal.  We see the poor and the socially marginalised go without decent homes and basic healthcare.

Public patients face health rationing like never before as they are increasingly viewed as a burden instead of as a responsibility.  Governments see restricting treatments and euthanasia as a means of limiting health spending and overcoming their failure to balance economic budgets.

Those in the later stages of life can be most vulnerable and palliative care patients can be made to feel unworthy of care.  Families cope with watching loved ones get poor care –

“Dad worked all his life and paid taxes but when he really needed help they just ignored him.  They just saw him as old and useless, he was only 60”

“I have PTSD after the death of my son, I don’t think I’ll ever recover”

“They gave my mother too much morphine for pain, she became unresponsive.  They said she was dying and stopped all treatment.  They said it was best to “die with dignity” but there was no dignity.  They said she couldn’t recover. I had to insist and insist that they recommenced IV fluids so that she didn’t become dehydrated while over sedated.  Eventually they restarted fluids and my mother recovered from the sedation the next day enough to go home and spend weeks with her loved ones and grandchildren.  They wanted to deny my mother this precious time.”

“They just let my father die after he had been in the  nursing home for 3 years, they don’t want anyone to live longer than 3 years. I wanted a second opinion and a specialist but they denied my father good medical care.  They just let him die” 

“I think John was dead  for hours before they told us.  They didn’t say anything but I noticed his fingers were stiff and I could not straighten them.  They came and went and said nothing.  Early in John’s illness, the hospital staff had always been so friendly and supportive.  But when we really needed care and support , they just left us alone as though we were lepers.  There was nothing but coldness and silence.”

“Dad made sure the palliative care doctors stayed away from Mum while she was in hospital.  They had been so uncaring and intrusive, they had upset Mum so much in the last few months of her life”

Hearing the stories of other families has made me realise that our family was not alone in suffering from poor healthcare. When my family member died, we called for the nurse. She walked in checked for a pulse and then walked out saying nothing.  She left us alone for half an hour.  I thought her silence was weird.  At the time I felt sorry for the nurse. She was of a different culture and English was her second language.  I thought she did not know how to communicate.  After half an hour, she returned, checked for a pulse again on the stiff  body and said nothing except that she would call the doctor. I wondered why she had taken so long.  The doctor came to do the formality of signing the death certificate.  No one asked if we were ok, we were just a formality.  This was one last bad experience after months of trauma fighting for better healthcare. I thought this experience was weird but after listening to other families, I realise it was normal for our health system.  

Despite my experiences


Despite the economic rationalism focusing on cutting services to the most needy people –

Despite our broken public health system and politicians who seem only interested in their own careers and ignore the needs of the people who they are paid to serve –

Despite the public apathy to speak up about poor healthcare even though it can affect each and every one of us at our most desperate time –


I do hope that in 2018, healthcare will improve.  I hope health professionals will see the dying as sick people in need of care and not just as  economic burdens to be discarded as quickly and cheaply as possible.

My wish for 2018 is that people will stop accepting poor health care and politicians who don’t care.

My hope is that people will stop saying, ” The health system is broken and we can’t fix it. “





This is not to say that supportive care in other stages of illness is not important. But where possible supportive care for chronic illness and in the early stages of terminal illness would be best provided by other professionals, those whose interest and speciality is the illness that the person has. General practitioners should also be better funded in order to provide quality holistic care.

A person in the early stages of cancer should not have the added stress of being referred to palliative care forced on them in order to ensure that they spend as little time as possible in the acute care hospital and therefore save the health service money.

People should not be seen as nothing more than items of expenditure as they seem to be in the Qld Public Health System. Having watched family members suffer with cancer, I can say that there is no comparison between good supportive care from a qualified oncologist who looks at the whole person, and care by palliative care teams who know little about the person’s actual illness and health situation. Home visiting teams usually rely on nurses or inexperienced trainee doctors.

The public hospital policy of referral as early as possible is disrespectful to patients. Patients should be the ones to decide when they wish to engage with palliative care services. Early referral can greatly increase stress and destroy hope leading to increases in depression. Early palliative care as utilised by the public health system can make patients attuned to the fact that they are not wanted in the acute health system.

These patients are not just an economic burden. They are our children, our brothers, sisters, spouses, lovers, mothers, fathers and special friends. These people are important, they are human beings.

Patients with terminal illness can often benefit from acute care, but health rationing can mean they go without. Aspects of their illness should be treated but may go untreated. New conditions can go unrecognised and untreated as they are “palliative” and resources must not be wasted on them.

Watching a loved one suffer in a Qld Public Health System is a horrible experience. They can be made to feel as they are nothing but a burden and unworthy of treatment even though they may be months or years away from needing end of life care.

If you think my observations and perceptions are extreme, then think again. The resource pressure and health rationing was confirmed by the public hospital CEO, when I wrote to ask why an outpatient was referred to unneeded and unwanted in home palliative care months before he was expected to need end of life care.


Four months later the patient transferred care to the private health system to receive good outpatient care by an oncoligist who also specialised in palliative care. He never reached a stage where he required in home palliative care, so the public hospital had caused months of greatly increased stress for no benefit.

Many people go without good end of life care. Increasing numbers die in nursing homes that do not have appropriate staffing to provide good end of life care. Palliative care teams should be visiting those dying alone and neglected in nursing homes instead of specialising in getting people out of the acute care setting as early as possible. While we can’t resource good end of life care, we should not be forcing patients into early palliative care.


Photo by maxlkt via Pixabay

Palliative Care : Honesty verses Optimism

Patients generally expect honesty, yet there often is a lack of honesty when it comes to discussions on prognosis, treatment options, and palliative care services.

Some doctors use the excuse that patients really prefer optimism. However optimism is not the opposite of honesty.

It is true that some patients do not want a lot of discussion about their prognosis.  Respect their wishes and refrain from guessing, but you still need to be honest if you are presenting a patient with treatment options. In no other area of medicine do patients get offered treatment without having all the risks and all the possible  outcomes explained. For example if only 10% of similar patients live beyond 6 months, do what you can to give the patient their best chance of being part of the 10%. This is honest optimism. Hope and optimism do help patients to cope with pain and the day to day challenges of cancer.

Don’t kill your patient’s hope by just dumping them on early palliative care. I have seen the unnecessary stress this caused a family member when referred to unwanted unneeded palliative care three months prior to the diagnosis that the cancer had returned. Many patients think there is nothing worse than a doctor who gives up and abandons them.  Don’t tell your patients that palliative care are experts in pain management if you know the local service is under resourced and can’t possibly provide good care. Palliative Care is not a magic wand that takes away pain and stress. It is often very limited. People can die at home neglected and in pain.

Wanting one’s doctor to do everything practical to prolong life is not delusional. I am not referring to over treatment but to an expectation that good medical care will be provided right to the end. Some patients are well aware of the seriousness of their diagnosis and get their personal affairs in order but they don’t wish to give up, they want to fight to the end. This should be respected. Unfortunately they are often told to just go home and die as quickly, quietly and as cheaply as possible.

Optimism and practical honesty should work together to improve the experience of the patient. Unwanted early palliative care can make the patient feel like they are being thrown on the scrap heap before they are dead.

There are other patients who suffer ill effects from treatments given without any real explanation of possible outcomes and side effects.  They are not told that it is their choice. They are not told that it is OK to want all possible treatment that they can have, and that it is also OK to say no to further treatment.

Some patients have treatment to help with symptoms without realising that it may cause worse suffering and even lead to an earlier death in some cases. Much more effort and honesty needs to go into communication.

Both honesty and optimism are essential for good care.



Photo by valelopardo via pixabay


Why is it so hard to listen and accept people who are experiencing illness ?

My experience being a carer led me to be shocked by the self -righteousness and arrogance of health professionals. They seemed totally convinced that they knew and understood the experience of the patient better than the patient.

It seems so easy for health workers to talk about giving respect and dignity to patients but in reality they seem to have no idea.

Perhaps this is not just health workers. Perhaps this self-righteousness is entrenched in our society. Maybe we all need to become more aware of our own self-righteousness and prejudice.

This blog from Kate Swaffer should cause us all to think about how we respond to people who have a terminal illness.

The last few months have been a very difficult time for me; physically, emotionally and also in terms of managing the disabilities of dementia, and due to this it has been very necessary for me to manage the stress. Since February, I have consciously kept myself much busier than usual to avoid thinking about the pain of being […]

via The real tragedy of dementia —


Just because I said I’d rather die at home, doesn’t give you the right to assume that I don’t want acute medical care.

We prefer to die at home but that is not a YES or NO question, one always has conditions attached. We still expect Acute Care Hospitals to be there if we are sick.

What do I mean when I say that I wish to die at home ?

l mean that ideally, I would prefer to live a good long life, never get sick, and die peacefully at home in my sleep.

It does not mean that I would wish to die at home if I am no longer able to care for myself. Why would anyone wish to burden their family with 24 hour care? 

Why would anyone wish to thrust their children into financial difficulty by being forced to give up their employment or their business and become 24 hour carers.

Palliative Care academics say they have done surveys. I must confess that I did the survey and ticked the box to say I’d rather die at home. This was because of the way the question was loaded.  It said , “If you could be sure that good care would be available.”

In an ideal fairytale world, good care might be available at home. Maybe a 24 hour nurse and a doctor on call when needed and a hospital close by. That would be good.

However my health service said good care is a one off assessment by a trainee doctor, then referral to palliative care nurses who call the domiciliary nurses for you. It is the  domiciliary carers from an organisation such as Blue Care who actually carry out the work. There is nothing new about having the Blue Nurses call, they were available in my grandmother’s day, only then they were all actual qualified nurses. You will also get an occasional visit from palliative care nurses who talk to you about your symptoms.

You might expect that a Registered nurse would turn up to give pain injections but my family member was told that in this event it would be myself who would be trained to give subcutaneous injections. I thought it strange that they said this to my family member without first having the manners to ask me if I was capable and or willing. I thought they might like to know if I was anxious or haemophobic. But I would save them money so everything would be done by me. Carers are so good at saving health services money.

Palliative Care nurses also say they give support to family members and in some services I believe they are very good but in other services support for family members and carers seems to exist only in theory.

Yesterday I saw a cartoon depicting a frustrated overworked emergency doctor screaming, “why has that patient been placed in resuss when he had said he wants to die at home”?

I ask why would a doctor assume a patient wants to die right now, today just because they said they wished to be able to die at home ? Why would a doctor assume a person doesn’t want further treatment or to be resuscitated just because they hope one day to die at home. If a person presents at the hospital, a doctor should assume they want to be there and that they expect acute care unless otherwise clearly stated. These people are sick people and should get the same respect and the same communication as other patients get.

In their busy rushed environment, emergency staff may quickly judge a 60 year old to be passed their used by date. They may be totally unaware of their own ageism. They may have never taken the time to notice how many older people really enjoy and value their lives.

Palliative Care academics think a five minute tick box online survey is a good way to evaluate peoples wishes. I believe any educated person should realise that such evidence is really worthless except as a tool to help get people out of acute hospitals as quickly as possible so that they are encouraged not to ask for further treatment but be convinced to  die as cheaply as possible.

Yes I want to die at home provided I am not sick.


Photo by andreas160578 via Pixabay


Bucket List -Overflowing with the Ordinary.

People dream of Bucket Lists full of adventure and far away places.

But cancer can have a way of changing one’s perspective. It can cause us to value those treasures already in our bucket. We value more the simple but wonderful treasures that are family, contentment, and the ordinary day to day life. We come to see all these things in a different light.

It really doesn’t matter if we haven’t climbed that mountain, reached that goal, or visited that place.

The ordinary beautiful experiences of daily life is what we don’t wish to give up.

  • a hug
  • a kiss
  • the sound of birds
  • the smell of flowers
  • a morning coffee
  • a late night snack
  • friendship
  • family
  • a stranger’s smile
  • a child’s laughter
  • the sound of rain
  • a place to call home
  • the joy of dreaming

Having been a cancer carer and having watched a love one fight to hold on to life,  my bucket list has changed.

My list now  includes a walk on that familiar beach; time to sit on my garden swing and soak up the winter sun;  time to watch the butterflies dart to and fro ; to be thankful for the privilege of watching the seasons come and go; quiet days to indulge in simple pleasures; time to share with friends and family; time for love, laughter, prayer and dreams.

There is no need to search for the unusual to fill our bucket lists as we realise just how many treasures are already overflowing our buckets. The most precious treasures are those that we have loved most and the simple ordinary everyday pleasures that nurture our faith and our humanity.


Photo by Coleur via Pixabay



Death as a Normal Part of Life

Palliative Care academics like to carry on about our failure to respond appropriately to death.

Death is a normal part of life when one is dying of old age.

Early death from cancer or some other dreaded disease may sometimes become inevitable but should not be considered normal.

Excuses should never be made for poor medical care.

It is not for palliative care staff to tell people how to view death.

It should be the role of palliative care staff to respect patients, the views of patients, and the wishes of patients. Palliative Care staff should be advocating for patients , not telling them what to think and what to choose.

Palliative Care staff should see their role as serving patients and doing no harm.  They should not be seeking to save the government and/or the health service as much money as possible in order to secure and expand their careers and increase the financial profits of their organisations.

People matter, All people matter, Dying people need an advocate !

Photo by (bfleeson) Ben Fleeson via Pixabay

Written after an experience with a Queensland Health Public Palliative Care Team



The Burden of Death

Death is a normal part of life.

I therefore argue that like birth, death is something that should be budgeted for by health services and the dying should never be treated as though they are an unwanted burden on society.

Dying people are still people and should never be treated as less than human. Dying people are also often sick people. When dying people are sick, they should get the same care and support that other sick people get. They should never be pushed out of sight into the palliative care corner only to be neglected and forgotten because they are seen as unimportant. They should never be unwelcome at hospitals, their sickness is just as real and their  pain just as sharp as that of any other patient.

If hospitals are  under resourced then this is not the fault of the patient with cancer, it is the fault of politicians who fail to plan. Today we are told that palliative care as early as possible is best. But why should a person have their hope stripped away months or years before they need end of life care. I have seen how much extra stress early palliative care can cause. One should never be forced to accept palliative care just to get pain treated.

I do not argue for over treatment or futile treatments, but I argue for a high standard of medical care for all sick people. Palliative care patients are just as important as anyone else and so like everyone else they should have access to qualified doctors and not be forced to rely on nurses and junior team doctors.

Australia is losing it’s compassion and moving into a world of ageism and of victim blaming. No one chooses to die young from cancer, they should never be told they are a burden to the health system.


Politicians look for excuses not to maintain Australia’s health system and move towards an American style health system , and this is by no means anything to be proud of, or anything that should be accepted.

( written after an experience with a Brisbane public health system )

Photo by Michael Gaida via Pixabay


This Palliative Care Week I call on the Queensland Health Minister, Hon Cameron Dick to resign.

The Health Minister, the Hon Cameron Dick ignores complaints about poor Palliative Care in Queensland.

  • patients can be neglected
  • the right to give informed consent can be overlooked
  • patients do not all receive good pain management
  • some patients are referred too early for palliative care, before it’s needed or wanted
  • some patients are not treated with respect
  • patients told they are a burden
  • patients told it is too expensive to treat them
  • families and carers not listened too
  • patients can be denied a voice in their care
  • patients pressured to make decisions while over sedated
  • palliative care staff “deem” what is appropriate instead of giving choices to patients
  • hospitals and senior palliative care doctors can be arrogant and uncaring


The Health Minister denies responsibility saying that public hospitals are ” statutory bodies that are independent and locally controlled.  This is not good enough , he knows he is ultimately responsible.

There exists no independent advocate for palliative care patients and no effective health complaints system for palliative care patients ( they are dead before they get any sort of response from the Health Ombudsman ).   



Scarred by Palliative Care

Palliative Care Week is coming up. We’ll be told polished stories of how good Palliative Care is and how we should all embrace Palliative Care as early as possible.

But out in suburbia the lack of resources hits home.  There are no resources to provide good care.  People are told that they must choose to die at home and that good care will be provided.  Sadly Palliative Care is often crushingly disappointing.

Having seen poor care, having watched a family member coerced onto unwanted unneeded early Palliative Care, having seen people hurt and depressed by the care that their loved ones received, I can only believe that there is a lack of honesty in discussions about Palliative Care.

After having a devastating experience with a public health service in Brisbane, I can only conclude that the health service was using Early Palliative Care as a means of potentially reducing overall hospital costs without any regard for the welfare of patients.