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/

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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/

AN OBLIGATION TO REDUCE COSTS _ Should Palliative Care’s role be to save the health budget ?

I was once very naïve and believed that good care would be there when it was needed, but now I have seen how badly patients can be treated just because they have a life limiting illness. I have watched a family member have his hope destroyed as he was coerced on to palliative care months before they were expected to need end of life care. I watched their hope and control stripped away by palliative care staff who seem to think they are cognitively superior to clients and their families. Why should people be looked down on by those who are paid to care and respect ?
It’s heartbreaking to see that imposed care “choices” are really all about money and reducing hospital costs. To see patients treated as less than human just because they cannot overcome their cancer. To have no where to turn for help when patients are neglected. To be powerless while family members are treated badly. To find the health service seem so hostile to feedback, all the time while they love to say that they listen to patients and families. Then to find there is no effective health complaints system and that no one cares how much people suffer. The reality is- they just want to save money

I hear palliative care staff carry on about people in western society having to reconnect and accept death as a normal part of life. But dying early from cancer is not normal and poor medical care should never be seen as normal. I have a multicultural family and live in a multicultural society. I see no evidence that western people handle grief in a less healthy manner than others. I wonder what makes palliative care staff think that they have a right to tell people how they should face illness and death. All people, all cultures experience grief and I believe that lack of good medical care would cause anguish in any culture.

Prior to my family members illness, I had seen friends and relatives die after treatment in the private health system. They got good care and support all the way through their illness. Nobody ever tried to push them on to palliative care. They were treated with dignity and respect while receiving good pain management. I thought this was normal. I thought we could take good health care for granted in Australia. I had no way of knowing that patients could be treated so differently in the Queensland public health system.
I never expected to see a family member pressured for months to accept in home palliative care that they did not need or want. This caused so much unnecessary added stress to what was already a very difficult situation. In home palliative care never became necessary so all this stress was for nothing. Why waste resources giving palliative care to people who don’t want it and cause them stress while so many elderly people desperately need good end of life care and can’t get it ?
This experience has destroyed my faith in our health care system. My pride in my country was shattered as I saw people treated as nothing more than a burden to the system. I saw people told that they wanted the cheapest treatment in such a way to make them feel they had no choices.
We are advancing quickly in health care. Financial pressure sees a global move toward “completed life” and “assisted dying”. No matter how pretty euthanasia is painted, it is chiefly an economic policy. As a society we do not want to pay the cost of caring for the sick. We have the resources to provide medical care and pain management but we don’t want to be burdened.
This blog has been written after an experience with a QLDHeath palliative care service in Brisbane and a very disappointing response from The Health Service, The CEO of the Health Service, Queensland Health, Palliative Care Queensland, The Office of the Queensland Ombudsman and The Queensland Health Minister .

https://australianpalliativecare.wordpress.com/2017/12/29/palliative-care-hopes-for-2018/

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

https://australianpalliativecare.wordpress.com/2016/09/27/dying-in-silence-suffering-quietly-makes-the-health-system-look-dignified/

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

https://australianpalliativecare.wordpress.com/2016/10/09/the-mentally-ill-homeless-need-care-has-our-society-lost-its-soul/

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

I STILL HOPE FOR IMPROVEMENTS IN HEALTHCARE

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 –

THERE IS STILL HOPE

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. “

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/2016/09/27/dying-in-silence-suffering-quietly-makes-the-health-system-look-dignified/

https://australianpalliativecare.wordpress.com/2016/10/09/the-mentally-ill-homeless-need-care-has-our-society-lost-its-soul/

 

 

PALLIATIVE CARE SHOULD GO BACK TO BASICS : IT SHOULD BE ABOUT DEATH, DYING, AND PROVIDING SUPPORTIVE CARE IN THE LAST FEW WEEKS OF LIFE

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.

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

https://australianpalliativecare.wordpress.com/2016/09/27/dying-in-silence-suffering-quietly-makes-the-health-system-look-dignified/

 

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

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

https://australianpalliativecare.wordpress.com/2016/09/14/is-palliative-care-working-to-save-money-at-the-expense-of-patients

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.

https://australianpalliativecare.wordpress.com/2016/09/14/is-palliative-care-working-to-save-money-at-the-expense-of-patients/

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

https://australianpalliativecare.wordpress.com/2017/10/16/palliative-care-should-go-back-to-basics-it-should-be-a/

 

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