5 Myths Spread By Palliative Care Professionals.

Update _This Blog was written in 2017, after reading so many articles on Palliative Care Myths. In reality we can have all the good theory in the world but if it does not reflect the reality in our resource pressured hospitals, then palliative care theory is really misleading. Unfortunately there is no good news to add. Our health system is more pressured than ever and Palliative Care patients suffer more at the bottom of the health priority mess. Our Government refuses to talk about our health care mess, but repeatedly turns their focus to talking about the future Brisbane Olympics, if only Healthcare was as important as sport.

1. Early Palliative Care is for the benefit of the patient

Unfortunately, it’s really all about costs,  much research is going on to demonstrate that early palliative care can reduce costs.  This is great news for governments and health services.  This is also great news for agencies making money from Palliative Care and for those with a career in Palliative Care.  However it  is not necessarily the case that it is good news for the patients. 

Health services are under an extreme amount of resource pressure as healthcare funding is not given the priority it should get.  Dying people, the disabled and those over 65 are not considered important by society and there is a tendency to blame the sick person for putting pressure on resources. People are being pushed on to Palliative Care months or years before they need it.

Before my families’ experience with palliative care, I thought palliative care was a good thing that strove to help people.  I now realise just how naïve I was.   While all people need good end of life care in the last few weeks of life, palliative care is no longer about end of life care.  It has become a process of seeing how quickly people can be taken out of the acute care system and encouraged to die as quickly and cheaply as possible, they are told it is the dignified thing to do.

2.   Palliative Care will provide good pain relief

While this may be the case in theory.  In practice palliative care patients are seen as a drain on resources, and once they are labelled as “palliative” they are not seen as important, they can be pushed into a corner and forgotten.  While in hospital for a surgical procedure, my family member was given no choice but to have Palliative Care manage pain.  The only doctor that came near him to manage pain was a brand new intern just weeks out of medical school.  It seemed to me that palliative care was the only area of medicine that the hospital did not provide supervision for interns.  ( In other hospital departments, I have always seen interns followed by a more senior doctor ).  The intern had no expertise in pain management, she used a table that any hospital intern or cleaner could follow if need be. On one occasion, she carried out a pain assessment without walking in and seeing the patient.  I was not able to get a response about this from senior palliative care doctors, the health ombudsman, or the health minister, I assume they all see palliative care patients as unimportant.

3. Palliative Care Doctors and Nurses are caring and compassionate.

If one believes this, as I did, then one may be terribly disappointed. I do not doubt that there are many very compassionate and caring overworked, under resourced carers and nurses whose role it is to provide end of life care and many people find this a great help especially concerning the death of elderly relatives.  My family member who was not elderly received good end of life care in a private hospital and there were good doctors and wonderful oncology nurses. However prior to this , we had months of terrible experience in the public health system where specialised palliative care staff seemed cold and uncaring. They also seemed to have no awareness that they lacked basic communication skills.

Having had a terrible experience, I tried to talk to senior palliative care doctors.  I was shocked by what I perceived as their arrogance and highly defensive attitude.  They seemed caught up in their own importance and unwilling to listen. I could not see any concern at all for the welfare of patients.

4. Palliative Care cares for the family and carers

This was totally non existent. Having attended public hospital outpatients appointments and seeing palliative care staff at the hospital, as a 24 hr carer, no one ever asked how I was coping or what help I needed. However palliative care staff love to promote themselves by saying that they care for families.

5.Peak bodies advocate for Palliative Care Patients 

When I contacted the peak body, Palliative Care Queensland, I was shocked by their complete disinterest.  I wrote a number of times to Palliative Care Queensland to ask why they were not interested given that they claimed in their Mission Statement and in their Objectives that they advocate for consumers.  They just referred me to Health Consumers QLD who told me they had no funding for palliative care. Palliative Care Queensland gets its funding from service providers and I assume this is why they only advocate for service providers.  I noticed that the then President of Palliative Care Queensland was also the Director of the health service with the most to gain financially from contracts to provide palliative care services to QLD public patients.  After a letter from the Health Minister, Palliative Care Queensland changed their Mission Statement and their Objectives on their website to say something about collective advocacy. They also wrote me a very patronising letter.  I could not find any organisation that advocates for palliative care patients in Queensland.

This blog is my personal perception  based on my family’s experience in Brisbane, Australia.

Planning a Good Death is Dependent on a Good Health System being Available – Queensland Health Fails the Dying

Is Dying at Home Really Best ?

Is Palliative Care working to save money at the expense of patients?

DISCOUNT DISPOSALS : A Carer’s Perception of Palliative Care at an Australian Public Health Service

Poor Palliative Care Encourages Euthanasia …… This is Health System Failure

Planning a Good Death is Dependent on a Good Health System being Available – Queensland Health Fails the Dying

Today I read that Palliative Care Nurses are advocating for Queenslanders to take time to talk about death and plan how they would like to spend their last days.

Sounds a lovely idea, except we have no good healthcare service in Queensland. Unless one has very good health insurance and a loving caring capable family, one will be at the mercy of our over crowded under resourced public health system. Truth is there is so much talk about choice but in reality many are faced with no choices , they just must accept what is offered by our very poor health system.

People often find they are expected to die at home like it or not, alone and neglected with too little care and no access to a doctor. Families can become traumatised from watching loved ones die in pain at home without any access to doctors. Our public health system loves to blame the dying, the aged, and the disabled for pressure on our under resourced health system. Often the dying are made to feel that they are an unwanted burden to the system. They are told how they should die, and what they should accept because there are few resources and they are on the very bottom of the health system’s priority. There is in reality little or no choice.

Other people are even worse off. Sometimes they have no choice but to be dumped in a ghastly sub acute hospital, or worst still a care home. One does not have to be over 65 to be dumped in a care home because their cancer symptoms cause them to lose their independence. Being dumped in a Queensland sub acute hospital or a nursing home is not a choice but is often one’s worst nightmare come true. They are very unlikely to see a palliative care doctor after being dumped in a care home.

The state of aged care and care homes in Australia is a national disgrace. The neglect and abuse has been well documented by official reviews but yet nothing is done. The aged are not valued by our society, those over 60 suffer greatly due to ageism in our health care and our care homes are so underfunded that people can be dreadfully neglected.

So while we have so much wonderful talk about planning a good death. The reality is that for many in Queensland it is not death that people fear but rather poor health care, neglect and uncontrolled pain.

A substandard public health system does not promote choice. People fight to get basic care and palliative care patients are often denied access to doctors. There cannot be good palliative choices and planning if there is no good health system to support it. Our government keeps making excuses not to address the broken Queensland health system so talk of good health choices is meaningless for public health patients because in reality they often have no choices and just live out their last years in fear of devastating health care neglect.

Rather than hear Palliative care nurses ask people to think about their death wishes, it would be nice to hear nurses and other health professionals advocate for their patients to get good basic health care and access to doctors as without this, one is not free to make good health choices.

Photo : Pixabay peter_pyw 

https://australianpalliativecare.wordpress.com/2019/10/07/cancer-patients-face-a-lack-of-care-and-compassion-at-australian-public-hospitals/

https://australianpalliativecare.wordpress.com/2021/06/20/palliative-care-can-be-so-beautiful-when-you-dont-really-need-it-and-then-it-can-be-just-cruel-neglect-when-you-really-need-care/

Is Dying at Home Really Best ?

… people can really feel like they are in a pit of despair without any help ..

Here in Australia, dying at home seems way over rated , it’s economical and shifts the burden on to families who are often ill prepared or ill equipped . The promised support often doesn’t arrive leaving carers to watch their loved ones die in pain. Pain does not get less with a shift in location and few people have enough extended family who are physically able to provide 24 hour care if needs are complex. Care outside the home can allow families to have greater quality time with their loved one and reduce stress on the dying person.

Those with private health insurance tend to get more treatment options and have much better access to doctors, and this access to doctors may extend to later in their illness where it makes a huge difference, while others may struggle to access basic healthcare and can die at home alone and neglected. Without health insurance, a good doctor and a loving capable family, it is easy to die without appropriate care in Australia. Those in the public system are often left with very poor care, and this is simply not good enough, neither of our political parties are prepared to give healthcare the attention and priority it needs.

The shortage of good quality GP’s is another issue which results in many people suffering the last few years or months of their life without any appropriate care. People in their last months of life should be able to access quality GP care including after hours care. In my own area, it is currently becoming more difficult and more expensive to access a GP. After hours care is almost non existent, forcing people to attend hospital emergency centres. As health services deteriorate, it is the dying, the elderly and the disabled who suffer most.

Governments focus on what is best for health services to reduce costs instead of focusing on what is best for the patient,

Many people, especially in regional Australia can wait weeks to see a doctor, and may have to rely on nurses, other health practitioners, or telehealth . Dying people in pain, should be able to quickly access a qualified doctor but this is not happening in Australia.

Surveys ask people if they want to die at home if good care is available ? Sounds good but later they may discover they have little choice but to die at home without any good care and without any good pain management. Patients can suffer in extreme pain and families can be extremely traumatised as they can be shocked at the lack of care available and can be left feeling like they have let their loved one down by not succeeding in accessing appropriate care or pain management. I have talked to many people and those who say they have had a good experience are often those who have cared for someone with very basic needs and no real pain issues, these are often elderly people. But where people suffer greatly from cancer complications, or difficult pain, people can really feel like they are in a pit of despair without any help. Families can be left traumatised for many years after watching a loved one die without care and support.

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Photo : Pixabay unknownuserpanama 

What do we really mean when we say we want to die at home – It’s not a Yes or No Question !

see link

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.

Palliative Care can be so beautiful when you don’t really need it, and then it can be just cruel neglect when you really need care.

I am currently hearing an advertisement for palliative care involving a lady who has a wonderful experience with a palliative care professional and then packs her bags for an overseas holiday.

This sounds so wonderful , however it reminds me of people who have had a great experience early in their palliative care journey, only to later on suffer terrible neglect when they really need care.

Many of the people who tell me palliative care is great, are really not that sick, or are in a very stable condition.

It reminds me of a lady who said _

Palliative care is so great, my friend goes to see his palliative care doctor every month and they chat about his overseas trips.

Two years later that same person is saying her same 50 year old friend has been dumped in a nursing home because there is no other care available for him as his cancer prevents him from being mobile. The nursing home doctor saids he can’t order pain medication, he must rely on the palliative care team who rarely see him , if he’s lucky he sees a nurse. He no longer has any access to a palliative care doctor ( they must be busy talking to someone else about holidays ).

Others tell me that early in their journey medical staff are so lovely and helpful, but later in their journey, when it reaches a point where death is close and they really need care and support, no one wants to know them and medical staff avoid them like they are lepers. Families watch love ones die at home often without any access to a qualified doctor and very poor pain management.

Often Palliative care organisations tell us what wonderful services they provide. They may have wonderful art therapy, social workers and psychologists but all this is useless when the time comes you need someone to help you get to the bathroom or someone to deal with out of control pain in the middle of the night.

If you are considering Palliative Care consider asking _

Will there be access to a qualified doctor in your last weeks ?

How often will you see qualified nurses ?.

Who provides the care ?

If it’s an inpatient facility, ask about staff types and numbers , day, afternoon and night shifts during the week, and also on weekends ?

Is there always a qualified nurse available on every shift ?.

Can you continue to see your own specialist or doctor ?

What happens if you are sick after hours ?

What happens if you need acute care in the last months of life, who will organise this ? Will you just go without ?

My family’s experience with palliative care in Queensland was crushingly disappointing, I hope others have better experiences.

It is possible to provide good care, but Governments and Health Services need to have a will to provide good care and not just continually look for ways to reduce costs.

I understand that Palliative Care is much more than End of Life Care but when so many in places like Queensland, struggle to get access to basic medical care, access to qualified doctors and quality pain management, then these simple basic health care needs should be a priority.

Photo Credit : Pixabay – Michael Gaida

Euthanasia will save Queensland money at the expense of the vulnerable

Dying to Know Week : Why do Palliative Care professionals think it is their role to initiate discussion on Death ?

Christmas : When joy collides with pain, suffering and sickness

A stark cold hospital room or a sad lonely house full exhaustion and pain is not on anyone’s Christmas wish list, but for many this will be the reality on Christmas Day.

Sickness, pain, loneliness and grief does not take a holiday for Christmas.

The effects of sickness and grief can be greatly magnified at this time. While there seems to be busyness and celebration all around, many feel most isolated, sad and vulnerable.

If hurt and despair come in like a flood at Christmas, do not be taken by surprise and do not feel you need to fight negative emotions. Accept the reality of sadness and struggles but be careful not to feed negative emotions as they are always looking for an opportunity to magnify their presence.

Some find Christmas an amazing source of strength and comfort, so much so that we have numerous streaming services dedicated to Christmas music 365 days a year. It can remind us of happy memories or ignite a sense of eternal hope. Christmas often inspires acts of goodwill toward complete strangers.

If our energy is overly invested in material things such as gifts and feasts, then Christmas day can be followed by depressing emptiness as material things do not fill our inner most needs.

Christmas causes us to re-evaluate our lives, and think about what is really important to us. It can be a time mixed with both great joy and great heartache. Often we are totally unaware of the pain and heartache felt by those around us. Though you may be sick and struggling with pain, perhaps you still have a sense of inner peace. You may not see that your nurse or your neighbour is bravely putting on a bright face because they are swamped by deep despair as they long to have a loving family like you do.

All of us have unique strengths and struggles in life. Life is always unfair. Some suffer much more than others. However Christmas is a time to remember our blessings and our potential to show goodwill to others.

Never underestimate the difference you can make to another’s life by giving the gift of a simple kind word, a smile, a thank-you, or a simple gesture of encouragement. A single kind word can change one’s outlook, affect their decisions and change their whole life for good, and they can go on to encourage others. Kindness and encouragement have a ripple effect that can continue on for generations as people show love and kindness to others.

Be generous with your gift of love to your family and to strangers this Christmas. Never miss an opportunity to leave a legacy of love.

Photo : InspiredImages / 1076 images Pixabay

https://australianpalliativecare.wordpress.com/2017/06/12/bucket-list-simple-ordinary-every-day-pleasures/

https://australianpalliativecare.wordpress.com/2016/12/18/sickness-doesnt-take-a-holiday-for-christmas/

Euthanasia will save Queensland money at the expense of the vulnerable

Governments and Hospitals are now embracing very early Palliative Care as a means of attempting to tame rising health costs.

My family’s experience with cancer made it very clear to me that there is much injustice in Australian health care. If you have a good family, health insurance and a good specialist then chances are you will get good care. If you are in a public hospital, it is not unusual to be made to feel like an unwanted burden.

There are many processes and procedures in place to ensure that unnecessary expenses are limited in the last years of life. But there is nothing to protect patients from not being able to access appropriate medical care. Palliative care patients are expected to rely on nurses and junior team doctors. They often have no access to a qualified doctor and a “palliative care” label can make it difficult or impossible to access basic GP care.

People are being referred to Palliative Care months or years before they require end of life care.  They say “as early as possible is best “.

Often people feel as though they have no choice but to accept early palliative care.  While early palliative care can sometimes be good, not everyone wants it.  Having early palliative care imposed on people who don’t want it is not a good thing.

Meeting Palliative Care teams and seeing that the doctors have very limited experience, one realises that no good care is going to be available.   One can be promised expert care prior to referral, only to be depressingly disappointed.

Having watched a family member be coerced into early palliative care, I am all to aware of the damage it can do to one’s hope.

We attended two outpatient palliative care appointments and this was crushingly disappointing.  The very inexperienced doctor offered no glimmer of hope that good treatment  would be available.

Later during an inpatient admission for a procedure, we were told that palliative care would manage pain as they were experts in pain management.  There was no choice offered, this was imposed.  No expert pain management eventuated.  The only doctor that came to manage pain was a brand new intern just out of medical school.

I repeatedly heard patients being told that they would wish to die at home. There was no discussion about options or choices.  Staff always thought they knew the patients wishes.  They always believed they new best for the patients.  These are the same staff who advocate for their own role saying they give choices and options to patients.

It seemed that once patients were given the palliative label, they were also given a very strong message that they were no longer welcome at the hospital even though they were not expected to need end of life care for at least months.

I believe that once people were labeled as palliative, they were treated as less human than other patients.  They were no longer treated with respect and no longer kept informed about their condition.

Patients are made to feel that they are just a burden to the system and that they would be selfish to expect anything other than the cheapest treatment.

If this system continues to deteriorate, the next step will be imposing “Euthanasia” on the vulnerable.

Where people are treated as less than human, where there is no respect, no choices, and very poor pain management, many will see medically assisted death as their only reasonable choice.

In no way can this be viewed as improving the quality of life, this is a failure to provide good quality health care.

Photo : Pixabay/Violinka

https://australianpalliativecare.wordpress.com/2017/02/17/5-myths-spread-by-palliative-care-professionals/

https://australianpalliativecare.wordpress.com/2017/01/03/palliative-care-a-journey-that-requires-safeguards/

Cancer patients face a lack of Care and Compassion at Australian Public Hospitals

DISCOUNT DISPOSALS : A Carer’s Perception of Palliative Care at an Australian Public Health Service

Palliative Care doctors hoover around hospital corridors like a pack of vultures ready to swoop on misfortune. It’s their job to reduce the burden of cost.

“Mr Hope you’ll have to change your name. The health system can’t afford hope. Doctor Know-it-all has met with his infallible team and they have concluded that your cancer will almost certainly return. No use wasting time, the sooner we organise a smooth exit the better, and the cheaper.”

Don’t worry about those diabetic tablets and don’t stress about your diet. We know your wishes and we’ll see to it that you exit as quickly and smoothly as possible.

Just relax, we’ll ensure that all your wishes are followed. You’ll wish to die at home. Everyone does. It’s your place of choice. It’s not a time to be selfish. You wouldn’t wish to burden the system. We may be able to send a carer occasionally for a few minutes to help you get to the bathroom.

If you get sick, you don’t need to worry. It doesn’t matter, you’re not important. Don’t come to the hospital. You will not be welcome. If you do come, we will not see your pain. We will not see what can be fixed or what can be treated. We will only see what can’t be done, and fear the cost if you don’t co-operate and exit quickly.

If you are admitted, we’ll transfer you to Hospital X as you’d wish to be there. We can even manage to arrange the transfer without telling you. You would not wish to be informed. You would not like us to burden you with the details of your health care. We understand your wishes.

Hospital X does not have staff or facilities to treat illness but it is a vulture’s paradise. You would be happy there. You would be out of sight. We would be happy knowing that you were doing your part to help the health system look dignified.

We know that you have pain, but really you must understand that you can’t expect to see a doctor. We don’t have resources. Please remember that you are not important. We have a brand new intern, she will try to see you next week. Remember how lucky you are to have our service.

When you part from us, Dr Know-it-all will smile and cross you off his list of faceless patients who he has never set eyes on. He knows that one day, he too will die but for now he takes comfort in his confidence that he will never have to rely on the public health system or it’s arrangement with Hospital X.”

Photo via Pixabay :
madartzgraphics

https://australianpalliativecare.wordpress.com/2019/06/23/the-cost-of-poor-health-care-and-the-impact-on-carers/

https://australianpalliativecare.wordpress.com/2018/05/10/palliative-care-an-obligation-to-reduce-costs-_-should-palliative-cares-role-be-to-save-the-health-budget/

https://australianpalliativecare.wordpress.com/2017/06/15/just-because-i-said-id-rather-die-at-home-doesnt-give-you-the-right-to-assume-that-i-dont-want-acute-medical-care/

Dying to Know Week : Why do Palliative Care professionals think it is their role to initiate discussion on Death ?

Much of the death literacy columns and discussion on how to initiate discussion on death sound really rather insensitive to patients.

Health workers should not be playing death games. If you want to have a conversation about death, just be respectful and straightforward.

What has your treating doctor told you about your prognosis ?

How do you feel about your prognosis ?

If the patient does not understand their prognosis or has not been told their prognosis, you surely should contact their treating doctor as it is clearly his/her responsibility to explain prognosis to their patients.

I could think of nothing worse than hearing prognosis from palliative care teams who should be there to work alongside treating specialists or doctors, not there to replace treating doctors.

Even worse, palliative care teams often turn up uninvited and unannounced to see patients in hospital before they have heard their diagnosis from their treating doctor. This is most disrespectful and should never happen, it just adds so much stress.

In my families situation , public health palliative care did nothing but increase stress and take away choices and dignity. Their very inexperienced doctors and their nurses had no added suggestions for pain management.  

It seemed they were only concerned with telling the patient that they were expected to die at home, and they were no longer welcome at the hospital.

Having an early palliative care label also made it much more difficult to access GP services as most GP’s seem to not want to treat palliative care patients. 

I wander what would happen if palliative care staff stopped talking to each other about death and really started listening to patients and families. 

Image : Thanks to The Digital Artist via Pixabay

https://australianpalliativecare.wordpress.com/2016/10/28/discount-disposals-a-carers-perception-of-palliative-care-at-an-australian-public-health-service/

https://australianpalliativecare.wordpress.com/2019/06/23/the-cost-of-poor-health-care-and-the-impact-on-carers/

https://australianpalliativecare.wordpress.com/2017/02/17/5-myths-spread-by-palliative-care-professionals/

The cost of poor health care and the impact on carers

This blog commenced after an horrific experience with the Queensland Public Health System and the realisation that I perceived senior Queensland Health officers to be uncaring, defensive and extremely arrogant if one attempted to give any feedback via the Health Service or the Office of the Health Ombudsman.

I would love to think that the situation has improved, but I don’t find any evidence of that. Families continue to be traumatised by watching their loved ones receive poor care. They see their family members afraid to speak out about their poor care in fear that it will make their plight even worse.

“Their death was riddled in pain, distress and indignity. My sibling is experiencing intrusive flashbacks and I cannot get the sounds of my parent calling out for help out of my mind. I feel we failed my parent because we didn’t advocate strongly enough for them. At the same time I was distressed and not thinking clearly.” Quote from post to Patient Opinion , Australia, June 2019 regarding care at a Queensland hospital.

If one attempts to give feedback, one is typically given a standard organisation response such as . ” We value your feed back and will incorporate it into our reviews. ”

One then leaves with the feeling that all will be forgotten and bushed off the minute you walk out of the room. And it usually is.

I am all too aware of this after attempting to give feedback for two years while it was becoming increasingly clear that no one ever checked the facts or passed on the feedback.

I believe that before the Health Ombudsman Conciliation meeting started, the senior doctor demonstrated her attitude by snapping at me,

“You’ve had an apology, what more do you want ? ”

In fact, I had not had an apology. Even at the end of the meeting, I still had no apology. I believe that after two years of me writing letters, the senior doctor turned up at the meeting with my family member mixed up with another patient and no understanding of the facts because no one had bothered to check.  At the end of the meeting the doctor offered me condolences ( which I did not ask for ) and I perceived no indication that anything would change for future patients.  She seemed to have absolutely no understanding as to why I was disappointed with her response.

Later the hospital CEO wrote me a what I perceived to be a very rude, aggressive and extremely defensive letter which I still believe was designed to bully and intimidate me. The CEO must have thought Palliative Care patients were so unimportant that he did not bother to check the facts. He wrongly assumed that at the time of the incident  the patient was an inpatient taking up a bed and wrote a whole lot of insensitive and irrelevant information, and also wrote that hospitals have an obligation to reduce costs and to ration health services in order to  provide the  greater amount of good for the greater  number of people in the community. Had he checked the facts, he would have known the patient was an outpatient at the time of the incident that the complaint referred to.

I was unable to get a response about this letter from the Health Department. The Hospital Board wrote and said they saw nothing wrong with the response.  The Director of QldHealth , Dr Michael Walsh refused to comment about the letter except to say it was “strongly worded ”

I did eventually get an apology for “my perceptions” from Dr Michael Walsh, which I found quite offensive. I wrote assuring him there was nothing wrong with my perceptions.

I then did get an apology from  Dr Michael Walsh for the poor care my family member had received but no apology for the rude letter sent by the Hospital CEO. I was thankful that Dr Michael Walsh had at least listened.  I never received any apology directly from the health service or the Palliative Care Unit.  Even though they said they implemented a few meaningless token gestures, I saw no evidence that they had taken my complaint seriously enough to want to improve service for future patients. They may have taken steps to improve their PR.

There is currently some research relating to cancer survivorship that indicates carers can suffer more emotional stress than the patient with cancer. However if the cancer patient dies, no one counts the social, emotional, health and economic costs to carers.

I have heard of carers being in and out of Emergency Departments and having frequent admissions to hospital when their own physical health deteriorates for years following a death in the family. We have all heard of carers who die unexpectantly soon after the death of the one they were caring for. This cost can be much worse if carers believe the family member did not receive good care. Is there any real research to count the cost to the Health System of poor health care and its impact on carers ?

While a sense of loss and periods of grief are a normal part of life after a death of a loved one. This is a very different situation from carers who suffer years of PTSD ( usually untreated )  after helplessly watching poor care from Health Systems who seem to view the dying and the chronically ill as less human than other patients and make them feel like an unwanted burden on our under resourced Health Systems.  We should not be accepting that people will choose assisted dying because they believe that the system is broken and no good care is available.  What carer  has no ill effects from believing their family member or friend will chose euthanasia because they believe they are a burden and no help is available ?

Many carers devote years or months to caring. They can feel totally devastated from being ill equipped and unable to effectively advocate for better care. They can be forced to watch helplessly in anguish for long periods of poor care without any support or anywhere to turn for help.  I know that they say help is available, but I tried at length (all those organisations that you, the Health Department or anyone one else can suggest)  during my family members illness and no help is available when it is a matter of poor health care for those with a life limiting illness . Until now I have received no support of any kind from organisations when it comes to advocating for better care for palliative care patients. I discovered Palliative Care Qld get their funding from service providers, and I assume this is why they only advocate for service providers, they referred me to Health Consumers Qld who said they have no funding for Palliative Care. The purpose of Health Consumers Qld is to support Qld Health.  The Cancer Council and Carers Qld had no suggestions.  Carers are left completely on their own when it comes to poor care.

How many of these carers go on to develop long term PTSD ?  How many of these people suffer in silence without any support or treatment because they are too disheartened with a Health System which allowed their family member or friend to suffer without good care because of a lack of care , a lack of resources or health rationing.

I may be able to speak out about bad care, but I am told I am very unusual as most people can’t attempt to give any feedback when care is bad, they just keep their stress inside as they believe the Health System is broken and there is no point speaking out.  Many feel too intimidated  to question Health Professionals, they can be too emotional and distressed to approach a hospital or the Health Ombudsman. The truth is , if they do  go to the Health Ombudsman they will most likely find it useless, as I did.

We have patient charters to protect patients but as pointed out to me by the Health Ombudsman these are just guiding principles and do not provide any instrument for the Health Ombudsman to act on. It seems in Queensland, Health services are aware that there is no penalty for poor care especially when it involves the dying who seem to be  considered to have no value by our hospitals and our legal system as they have no longer any earning potential and are easily considered to be some kind of sub human group who are nothing but a financial burden.

Governments and Health Services seem to believe that any step to reduce this cost burden is a good step,  but no one counts the human suffering that results from poor health care. I have seen people burst into tears when they remember the end of life care that their family member or friend received years ago. There is no way these people will have the strength to provide feedback or to fill out a survey. These people remain silent and unheard.

Young carers miss out on education and social development, they can easily become mentally ill or chronically unemployed.

How many young carers never effectively resume their education ? or gain meaningful employment ?

How many carers become chronically ill ?

How many carers become chronically unemployed ? or under employed ?

How many mature aged carers ( over 40 ) become too despondent to ever attempt to re enter the work force ?  They will not be counted in unemployment figures if they are not on Centrelink benefits.

How often is post caring stress or PTSD a factor in suicide ? and what is the ongoing flow on health costs to families affected by these suicides ?

What is the financial cost of poor health care ?

Why is there no advocate for people in need of end of life care ?

Why is there no support or help in Queensland when carers are forced to stand by helplessly watching poor care ?

Why does our Health Minister ignore all these issues ?

 

 

Featured image by
Alexas_Fotos via Pixabay

 

https://australianpalliativecare.wordpress.com/2016/10/28/discount-disposals-a-carers-perception-of-palliative-care-at-an-australian-public-health-service/

https://australianpalliativecare.wordpress.com/2017/05/17/the-burden-of-death/

https://australianpalliativecare.wordpress.com/2018/05/10/palliative-care-an-obligation-to-reduce-costs-_-should-palliative-cares-role-be-to-save-the-health-budget/

 

 

 

 

 

Multidisciplinary Team meetings: Are they an excuse for poor care ?

Multidisciplinary team meetings can be a great help. If you are undergoing a major treatment or surgery, ask if your case will be discussed by MDT teams.  The benefits are obvious, your medical situation can be discussed by a team of specialists and/or healthcare practitioners. Ideally you should be present at the meetings. You should have a right to  know who has input into decisions affecting your healthcare, and also the rationale behind decisions

One would also expect that patients could access a record of who attends meetings and a summary of the basis on which decisions are made.

Like most things in healthcare, practice does not work as well as theory. I doubt there are any politicians or doctors who could really understand just what it is like to be a faceless public hospital patient who must rely on a secretive mysterious unknown “team” to make life and death decisions for them.

Having had the unfortunate experience of watching a family member endure an extended stay due to surgical complications , in a QLDHealth public hospital,  I came to view “the team” as a big excuse for no one seeing their role as providing information, and no one accepting any responsibility.

A decision is always made by “we” , “they” or “the team” . Even the Consultant refers to the team as “they”.  Doctors always seem to covey the message that no explanation or rationale is necessary as “the team is infallible”. The patient is requested to have blind trust. If one asks for an explanation, one is seen as unreasonable because “the team has decided”.  A patient does not get much respect, they are not kept informed or given a rationale for decisions. They are not told who attends team meetings and who makes decisions.

If you ask a question about a team decision, junior doctors advise you to ask senior doctors.  Seniors doctors are no where to be seen, or too busy to provide an explanation except to say the team knows best.

If you try to ask questions , you are told the team wants, or the teams thinks . You are not told who the team is, or why the team thinks or why the team wants as they do. If you want more information about the team, you might try to ask questions.

“Who is on the team ?”

“Well —  er  — we all are”

“Ok, then who made this decision ? ”

“I don’t know, they have team meetings ”

“Did you go to the meeting ?”

“No”

“Do you know who went to the meeting ?”

You never get an answer to that one.

If you persist, you might get a list of doctors who are on the team, but this does not mean anything. Just because a doctor is on the hospital’s Multidisciplinary team , it does not mean that they attended the particular meeting which discussed your condition. It does not mean that they know you exist.

After much enquiry, you might find out that Dr John Smith is on the team, but you will never know if Dr John Smith attended the meeting. He may have attended. He may have sent a senior registrar.  He may have sent his most junior intern. He may have sent no one. He may have thought your condition was not worth a minute of his time.

You may find out that there are a number of oncologists on the team, but none of them may have sent a representative to the team meeting.  I got the impression that many public hospital cancer patients never see anyone from the oncology team.  My family member never saw anyone from the oncology team for about 10 months after the surgical team diagnosed his cancer. Public hospitals wander why patients and families often loose confidence in the care provided. When things are continuously going wrong and the patient suffers more and more complications, doctors talk less and less and few people could have blind faith in the public health system.

Did an oncologist ever attend a team meeting ? I will never know. No one was able or willing to answer this question. While we were told that there were regular MDT meetings, there is very very scant reference to them in the medical records and never any mention of who attended these meetings.

If there is such a thing as a record of MDT meetings, this should be made available to patients, they should have a right to be informed.  Accurate records should be kept of MDT meetings. These meetings should be open and accountable, not secretive.

Do MDT meetings really serve the patient or are they just there to serve the health service ?  I don’t know. I can’t know because there is no information for patients and families.

The Health Minister and The Department of Health are failing to ensure that QLDHealth hospitals function in an open and transparent manner. They fail to provide patient’s rights to be informed and engaged in their health care decisions as set out by The Charter of Patient Rights.

https://australianpalliativecare.wordpress.com/2016/10/28/discount-disposals-a-carers-perception-of-palliative-care-at-an-australian-public-health-service/

https://australianpalliativecare.wordpress.com/2018/05/10/palliative-care-an-obligation-to-reduce-costs-_-should-palliative-cares-role-be-to-save-the-health-budget/

https://australianpalliativecare.wordpress.com/2017/01/03/palliative-care-a-journey-that-requires-safeguards/

https://australianpalliativecare.wordpress.com/2016/09/10/a-carers-response-to-the-statewide-qld-strategy-for-end-of-life-care-2015/