5 Myths Spread by Palliative Care Professionals.

  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.ceo4

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.

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

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/2016/09/22/poor-palliative-care-encourages-euthanasia-this-is-health-system-failure/

The Risks of Early Referral to Palliative Care

 

Currently patients are told that by accepting  an early referral to palliative care, their acute care needs will not be affected.  This is wrong and very misleading as it is unlikely that doctors and other health care professionals will continue to take their health concerns seriously once they have been referred to palliative care.

Patients may find that their GP (Family Doctor ) loses interest in their care once they are labelled as palliative.  They may find it difficult or impossible to find a new GP willing to take on their care.  Home visiting palliative care teams usually only have nurses or inexperienced junior trainee doctors who only specialise in symptom management. Being a palliative care patient can make it more difficult to access a qualified doctor.

If the patient gets a fever or other health concern and attends the hospital, they may find they are unwelcome as they are no longer seen as important once they have a palliative care label.  Their health concerns are less likely to be taken seriously and they are more likely to miss out on appropriate care.

Patients are told that they can still have acute care and chemotherapy. They can, but patients do not understand that once they accept a palliative care referral then if they become sick and require an admission, then even for a short admission, if possible they will be expected to accept admission to a sub acute hospital which does not have the same level of staffing or the same interest in delivering curative care. In theory they may have a choice but in practice they may have no choice. A sick vulnerable person in pain is not able to advocate for themselves when faced with hospital doctors who view them as a waste of resources.

In my city there is a large subacute hospital which is the fifth largest palliative care provider in the state ( in terms of services to public health patients -larger than the whole sunshine coast or the whole  Darling Downs service ). It seems to me that the public hospital service deliberately avoids telling patients that their care will be transferred to this hospital . I have asked numerous times why the health service is not open and honest about this contract and my question has been met with anger or a denial that many patients are referred to this hospital.  I have found the health service and the Health Department very resistant to providing information re this service.  It is my perception that this subacute hospital has a  bad reputation and so the health service finds it convenient not to tell people they are being referred to this hospital. The hospital CEO has assured me that the subacute hospital as an excellent reputation. According to their own self promotion material they do,  but  my perception is based on talking to patients, families and staff members.

Both the health service and the Health Department refuse to answer my questions by saying that there is a new referral process.  But the new referral process only involves referral to QLD Health facilities. It does not relate to referrals to this major sub acute hospital.

As a token gesture the public health service has re  written the information web page and brochure which now saids that if you live in the suburbs around the subacute hospital you may be referred there ( we were not given the brochure and I have no reason to believe other patients are given a brochure prior to referral ).

Like most people referred to the subacute hospital, we do not live in the suburbs around the subacute hospital and would have no way of knowing that the intention was to refer them to this subacute hospital that actually caters for a very large service area in Brisbane and not just the surrounding suburbs.

Patients have a right to know how contracts with private facilities will affect their future health care and this is not happening.

It’s my hope that no future patients will be referred to this subacute hospital or any other palliative care service without their knowledge and informed consent, as happened to my family member.

It is also my hope that senior palliative care doctors will become more people friendly instead of focusing on writing policies designed to save money at the expense of the sick and vulnerable.

I am asking for safeguards to protect Palliative Care Patients

  1. There needs to be regulatory instrument against which the Office of the Health Ombudsman can take action.
  2. A process needs to be in place to ensure that patients are fully informed before considering referral to palliative care
  •  Fully informed about their prognosis
  • Fully informed about all possible treatment options and all possible                        consequences of these options.
  • Fully informed about their health care rights.
  • Fully informed about the risks as well as the benefits of palliative care, this is normal practice for any other form of treatment. ( see discussion below ).
  •  Fully informed about how palliative care works and who provides it. eg. will it be a different facility and will they see fully qualified doctors.

3. A process to ensure patients are treated with respect and dignity.

4. A process in place to ensure that public health services are open and honest about      contracts with private service providers.

5. Safeguards to protect patients from being bullied or coerced into accepting referral. Patients should not be unnecessarily rushed into making decisions or bombarded with numerous decisions minutes after receiving a negative diagnosis. They should, where possible be given time to think and the opportunity to go away and discuss decisions with their GP first.

6. Safeguards to prevent palliative care staff pushing patients to make decisions during periods of over sedation or intense pain.  From my experience talking to patients and families, it seems that it is not unusual for patients to be pressured while they are over  sedated.

7.  Safeguards put in place to ensure that palliative care patients do not miss out on appropriate acute care ( this is necessary as patients are increasingly referred to palliative care months or years before they are expected to need end of life care.)

8. Patients should be informed about how health rationing affects their health care. They should not be told that referral is for their benefit alone, it should also be explained to the patient that health rationing is a reality and that early referral to palliative care is seen as having the potential to save on future hospital costs. Patients and their families should be fully informed about how resource pressure is affecting their care. Patients can often be unaware that health rationing is the major motivation for early referral to palliative care.

9. There needs to be a fully independent advocacy service for palliative care patients and their families and carers.

https://australianpalliativecare.wordpress.com/2016/10/08/the-need-for-an-advocacy-service-for-palliative-care-patients-a-carers-perception

 

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

Palliative Care : A journey that requires safeguards.

A number of palliative care professionals have asked me what exactly I am asking from those in authority.  Safeguards need to be put into place to protect patients from neglect.

I saw a family member have his hope stripped away when three months prior to the diagnosis that his cancer had returned, in anticipation of its return, he was referred to another facility for in home palliative care without his knowledge or consent. I was assured by hospital palliative care staff that this was their normal referral process.  People were referred to palliative care whenever staff “deemed it appropriate ” .  They could not seem to understand that it would be normal professional practice and common decency to tell the patient first.  It seems that sometimes respect for patients only happens in theory.

Safeguards need to be in place to ensure that patients are kept fully informed and allowed to participate in their health care decisions .  It is no use saying that we have an Australian Charter of Patient Rights and also specific charters for palliative care, as these are just ignored by health service providers as there is no effective complaints mechanism as these are just guiding principles and health services know that there are no consequences for not providing service according to these principles.

According to the QLD Health Ombudsman , Leon Atkinson-MacEwen

“the Charter is not an instrument against which I can take action.”

There is absolutely no protection for palliative care patients,  I have tried to speak to the Health Service including at a conciliation meeting organised by the Health Ombudsman and it was my perception that senior palliative care doctors were very arrogant and not willing to listen.

I have talked to the Health Minister, the Hon Cameron Dick and the Department of Health. I have been repeatedly told that the department has no power as responsibility and power has been given to health services . It seems clear to me that there is no one in authority in Queensland who has a genuine interest in protecting palliative care patients. It seems convenient for the Health Minister to ignore the fact that he is ultimately responsible for health care in Queensland.

It seems that those in authority are only interested in treating people as cheaply as possible.  I  wrote to the Hospital CEO and he must have considered palliative care so unimportant that he did not even bother to check the facts and wrongly assumed it must have been a case of a palliative care patient unnecessarily taking up a bed.  At the time of referral the patient was an outpatient.  I received a very aggressive, highly defensive response that I believe was intended to belittle and threaten me. I will not repeat the very insensitive comments in this letter. The hospital board has written to me saying they see nothing wrong with the letter.  I have been unable to get a response from the Minister for Health regarding this letter. I have been unable to get a response from the Director General of QLD Health except to say it was “strongly worded”

ceo4

I am asking for safeguards to protect Palliative Care Patients

  1. There needs to be regulatory instrument against which the Office of the Health Ombudsman can take action.
  2. A process needs to be in place to ensure that patients are fully informed before considering referral to palliative care
  •  Fully informed about their prognosis
  • Fully informed about all possible treatment options and all possible                        consequences of these options.
  • Fully informed about their health care rights.
  • Fully informed about the risks as well as the benefits of palliative care, this is normal practice for any other form of treatment. ( see discussion below ).
  •  Fully informed about how palliative care works and who provides it. eg. will it be a different facility and will they see fully qualified doctors.

3. A process to ensure patients are treated with respect and dignity.

4. A process in place to ensure that public health services are open and honest about      contracts with private service providers.

5. Safeguards to protect patients from being bullied or coerced into accepting referral. Patients should not be unnecessarily rushed into making decisions or bombarded with numerous decisions minutes after receiving a negative diagnosis. They should, where possible be given time to think and the opportunity to go away and discuss decisions with their GP first.

6. Safeguards to prevent palliative care staff pushing patients to make decisions during periods of over sedation or intense pain.  From my experience talking to patients and families, it seems that it is not unusual for patients to be pressured while they are over  sedated.

7.  Safeguards put in place to ensure that palliative care patients do not miss out on appropriate acute care ( this is necessary as patients are increasingly referred to palliative care months or years before they are expected to need end of life care.)

8. Patients should be informed about how health rationing affects their health care. They should not be told that referral is for their benefit alone, it should also be explained to the patient that health rationing is a reality and that early referral to palliative care is seen as having the potential to save on future hospital costs. Patients and their families should be fully informed about how resource pressure is affecting their care. Patients can often be unaware that health rationing is the major motivation for early referral to palliative care.

9. There needs to be a fully independent advocacy service for palliative care patients and their families and carers.

https://australianpalliativecare.wordpress.com/2016/10/08/the-need-for-an-advocacy-service-for-palliative-care-patients-a-carers-perception/

 

The Risks of Palliative Care

Currently patients are told that by accepting  an early referral to palliative care, their acute care needs will not be affected.  This is wrong and very misleading as it is unlikely that doctors and other health care professionals will continue to take their health concerns seriously once they have been referred to palliative care.

Patients may find that their GP (Family Doctor ) loses interest in their care once they are labelled as palliative.  They may find it difficult or impossible to find a new GP willing to take on their care.  Home visiting palliative care teams usually only have nurses or inexperienced junior trainee doctors who only specialise in symptom management. Being a palliative care patient can make it more difficult to access a qualified doctor.

If the patient gets a fever or other health concern and attends the hospital, they may find they are unwelcome as they are no longer seen as important once they have a palliative care label.  Their health concerns are less likely to be taken seriously and they are more likely to miss out on appropriate care.

Patients are told that they can still have acute care and chemotherapy. They can, but patients do not understand that once they accept a palliative care referral then if they become sick and require an admission, then even for a short admission, if possible they will be expected to accept admission to a sub acute hospital which does not have the same level of staffing or the same interest in delivering curative care. In theory they may have a choice but in practice they may have no choice. A sick vulnerable person in pain is not able to advocate for themselves when faced with hospital doctors who view them as a waste of resources.

In my city there is a large subacute hospital which is the fifth largest palliative care provider in the state ( in terms of services to public health patients -larger than the whole sunshine coast or the whole  Darling Downs service ). It seems to me that the public hospital service deliberately avoids telling patients that their care will be transferred to this hospital . I have asked numerous times why the health service is not open and honest about this contract and my question has been met with anger or a denial that many patients are referred to this hospital.  I have found the health service and the Health Department very resistant to providing information re this service.  It is my perception that this subacute hospital has a  bad reputation and so the health service finds it convenient not to tell people they are being referred to this hospital. The hospital CEO has assured me that the subacute hospital as an excellent reputation. According to their own self promotion material they do,  but  my perception is based on talking to patients, families and staff members.

Both the health service and the Health Department refuse to answer my questions by saying that there is a new referral process.  But the new referral process only involves referral to QLD Health facilities. It does not relate to referrals to this major sub acute hospital.

As a token gesture the public health service has re  written the information web page and brochure which now saids that if you live in the suburbs around the subacute hospital you may be referred there ( we were not given the brochure and I have no reason to believe other patients are given a brochure prior to referral ).

Like most people referred to the subacute hospital, we do not live in the suburbs around the subacute hospital and would have no way of knowing that the intention was to refer them to this subacute hospital that actually caters for a very large service area in Brisbane and not just the surrounding suburbs.

Patients have a right to know how contracts with private facilities will affect their future health care and this is not happening.

It’s my hope that no future patients will be referred to this subacute hospital or any other palliative care service without their knowledge and informed consent, as happened to my family member.

It is also my hope that senior palliative care doctors will become more people friendly instead of focusing on writing policies designed to save money at the expense of the sick and vulnerable.

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

 

Sickness doesn’t take a holiday for Christmas.

There’s hustle and bustle as people finalise work and rush off on journeys to spend happy times with loved ones. There’s talk of food preparations and exotic holidays. 

But for many facing health challenges , there is no break from struggle and no let up from daily pain.

Families and carers don’t get a holiday, they remain on call doing the best they can.

My Christmas wishes for all those suffering –

May you feel  strength and encouragement.

May your pain be less and your energy improved.

May the health report bring good news and lighten your load.

May you find some joy and someone to laugh with.

May your carers feel rested and refreshed.

May you ponder the Spirit of  Christmas and find meaning and hope.

Amidst all the joy and laughter, those struggling in pain can easily feel burdened  by what should be a wondrous occasion. Sometimes there is only pain and tears.

There may sometimes be no opportunity to celebrate with loved ones.  The desire for gift shopping can be lost and sadness, loneliness and struggles can often feel compounded at this time of year.  The pressure of not being able to keep up with the busyness of the season can leave one feeling stressed.

However Christmas is not about being busy.  It’s not about parties or shopping.  Christmas is not even about family gatherings.  These are just things we’ve added to Christmas.  We’ve made Christmas something it was never intended to be.  We’ve filled it so full of secondary things which are good but don’t compare to the wonder, joy and simplicity of Christmas.

dsc_0113-3zz

 

https://australianpalliativecare.wordpress.com/2016/09/24/some-days-you-just-need-to-look-on-the-bright-side-and-count-your-blessings/

https://australianpalliativecare.wordpress.com/2016/12/10/grief-follows-no-formula/

 

Grief Follows No Formula

Experts love to label and dissect the grieving process as if they are unaware of the extreme complexity of human nature and human relationships which surpasses understanding.

Having seen too many people die younger than anticipated, and watched families struggle to pick up the pieces of broken worlds, I see grief as too complicated to begin to understand.

I can’t know what people feel but I see the damage. I see acute and chronic changes in physical health. I see unemployment and financial losses. I hear of suicides and I’ve seen the effects of disappointment and loss of hope.

For me, I know what made grief worse.

  • Lack of good medical care
  • Poor communication by health professionals
  • Seemingly arrogant palliative care specialists who seem to believe that they always know best.

I was once very naive 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

ceo4

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 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.

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

https://australianpalliativecare.wordpress.com/2016/10/12/what-does-quality-of-life-actually-mean-not-what-you-would-think/

http://www.dailymail.co.uk/news/article-2161869/Top-doctors-chilling-claim-The-NHS-kills-130-000-elderly-patients-year.html

http://www.theglobeandmail.com/opinion/our-system-suffers-when-health-workers-are-muzzled/article33207845/

An Open Letter to the Hon Cameron Dick, Queensland Minister for Health : Failure to take the issue of informed consent seriously. Failure to ensure good cancer treatment to public hospital patients.

Dear Hon Cameron Dick

Queensland Minister for Health

RE : Failure to respond to patients not having their right to informed consent respected. Failure to provide good cancer treatment to public hospital patients. Palliative Care is different from other areas of health and requires it’s own advocacy service. Healthcare is being rationed and no one is explaining to the patients how this is impacting on their care.

The complaint involved the outpatient being referred to another facility for in home palliative care without his knowledge or consent. This was in anticipation that the cancer would return. The patient was then pressured for months to accepted the unwanted and unneeded referral. It also involved poor care by the health service during admissions for surgical procedures. There is no reason why you as Minister should not have seen to it that these concerns were taken seriously.

Dear Hon Cameron Dick,

On the 30 May 2016 , I wrote the following – I have been requesting a meeting for over a year.

RE: Inadequate response by the Health Department. The need for an advocacy service for people with a life limiting illness. It took two years to attempt to get a response from the health service and the OHO. Most patients are dead before they get any type of response. Also, a very inappropriate letter received from Dr xxxxx xxxxx, dated 13 January 2016.

As the Minister for Health, you have been quoted as saying that you want Queensland to have the best Palliative Care System.

Yet you have repeatedly refused to see me.

I refuse to accept that my concerns are not as important as anyone else’s concerns just because it involves Palliative Care.

This letter was ignored. Then following the Shadow Health Minister , Mr JohnPaul Langbroek writing to you as Minister, I was invited to attend a meeting with yourself. The Director General of Queensland Health, Mr Michael Walsh also attended the meeting along with two other senior officers on the 11 August 2016.

At this meeting I was given the impression that my concerns would be taken seriously and that I would be getting a response regarding the need for an advocate service.– I still have not had a response.

I have written numerous letters to ask why I did not get a response re the need for an advocate service, these were all ignored.

On Friday 11 November, I was told by a senior policy officer that they would not look into the issue because the Minister had told me that if I wanted an advocate service, then I could start one myself. They would not be looking into the matter.

It is clearly wrong that I should be expected to have the capacity to start an advocacy service.  It is the duty of the Minster to ensure that good quality health care is available to all Queenslanders.

Reasons why Palliative Care is different from other areas of health and requires it’s own advocacy service.

  1. I have been writing to the Minister and the Premier for two years about the neglect and abuse of Palliative Care patients in Qld public hospitals and I don’t believe anyone has taken the issue seriously.
  2. No other patients are having their health care compromised to a huge extent by the resource pressure that faces our public health hospitals. When I wrote to the health service CEO, Dr xxxx xxxx and asked why palliative care patients were treated so poorly, I received the following response.

“There is an obligation on hospital management and senior clinical staff to ensure that billion dollar entities like xxxxx operate efficiently for the greater good of the greater number in the community.”

People who are expected to die within the next two years are identified as suitable for early Palliative Care. It seemed clear to me that they are coerced into accepting early palliative care whether they wanted it or not.

Having a palliative care label applied to a patient months or years before they are expected to need end of life care puts them in a very vulnerable position. If they develop any health concerns , these can be easily overlooked or ignored because they are seen as “palliative”. Acute illness that can and should be treated can be confused with symptoms of their life limiting illness because once labelled palliative, they often only see very inexperienced doctors who often have little knowledge of the patients actual illness as they are only trained in symptom management. Patients can be pushed on to sub acute hospitals while they have acute health needs which should be addressed.

Also once labelled as Palliative it is almost impossible to find a GP willing to be interested in their general health care, so they can be just left to flounder without any care.

I have observed a huge amount of difference between public and private cancer care. It is not acceptable that patients who can’t afford private health insurance should have to accept such a low standard of care.

Healthcare is being rationed and no one is explaining to the patients how this is impacting on their care.

RE Inappropriate letter received from the health service CEO Dr xxx xxxx.

I have written to you as Minister for Health a number of times re this letter but have not had a response. I had an inadequate one paragraph response from Dr Michael Walsh describing it as “strongly worded” . The letter was extremely defensive, highly insensitive and written in an aggressive tone. I believe that the purpose of the letter was to threaten and belittle me.

  1. Dr xxxx refused to address a complaint about a senior doctor saying that Dr yyyyyyyy had a good reputation. This was a very illogical and unprofessional reason for not looking into a complaint. It seems Dr xxxx would only look at complaints regarding doctors who have a poor reputation. A good reputation can never be an excuse for not looking into a complaint.
  2. I requested an apology re my family member being wrongly accused of unnecessarily taking up a bed when he was in fact an outpatient at the time of referral and the only admissions he had were for surgical procedures. He actually had major surgical complications and given this one would expect the hospital to be more sensitive .
  3. Dr xxxxxx did not read the facts but just wrongly assumed the letter was about an inpatient and he rambled on with a lot of irrelevant information about the cost of beds, the hospital’s reputation and problems finding suitable placement for patients. The patient was an outpatient , not an elderly person and not in need of placement. If the matter had not been about a palliative care patient, I am sure the CEO would have made an effort to read the facts first before replying.

I have tried Palliative Care QLD and numerous other services, there is no service in QLD that advocates for Palliative Care Patients.

Yours sincerely

Forgotten Queensland Voter

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/2016/10/08/the-need-for-an-advocacy-service-for-palliative-care-patients-a-carers-perception/

 

Trying to be Heard in a Broken Health System : Every obstacle creates more determination.

To watch a loved one suffer without good medical care is hard.

To see one not treated with respect and dignity is difficult.

To fight for months to get information from the health system is wearisome.

To struggle to communicate when no one will listen is  stressful

To talk to hospital staff who see it’s just palliative care and wonder why they should care.

To talk to hospital liaison staff who say, not now we have other problems.

To try the health ombudsman who don’t bother to read the facts because it’s just palliative care.

To be ignored and belittled by senior doctors who tell you what a good service they have.

To be shocked by their arrogance.

To complain to the Minister for Health about a doctor and be offered grief counselling because it’s just palliative care and your complaint does not matter.

To fight and fight to be heard and no one will listen except those who have also been there.

To have friends comfort you by saying the health system’s broken, you can’t change it.

Be kind to yourself and give up like everyone else.

To ask why the vulnerable don’t have a voice and feel the silence.

There is no money and not enough votes from dying people, why should they matter ?

Today I had a new experience,I was blocked on twitter by Palliative Care Queensland,

the people whose role it is to care and advocate.

And they do care and they do advocate but maybe only for their own careers.

Seems one of our blogs hit a nerve.

Truth Hurts

The vulnerable count, every person counts, and I will not give up.

Every obstacle creates more determination.

“…the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. “
~Last Speech of Hubert H. Humphrey

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/2016/10/28/discount-disposals-a-carers-perception-of-palliative-care-at-an-australian-public-health-service/

 

 

 

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.”

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

https://australianpalliativecare.wordpress.com/2016/09/22/poor-palliative-care-encourages-euthanasia-this-is-health-system-failure/

https://australianpalliativecare.wordpress.com/2016/09/12/lets-talk-realistically-about-dying-and-palliative-care-a-carers-perspective/

What does “quality of life” actually mean ? – not what you would think.

You could easily be excused  for thinking “quality of life” refers to the amount of comfort, mobility and satisfaction one is able to achieve from life.  When doctors use the term “quality of life”, you may think that they are concerned about your quality of life and how this can be best achieved.  You may be led to believe that “quality of life” is the opposite to “length of life” .

Even when used with the best intentions, the term “quality of life” is extremely subjective. One person may find quality of life while living as a quadriplegic while another person may refuse treatment because they see no quality of life if they are required to use a walking aid for assistance.

There is also no logical reason to believe that “quality of life” is the opposite to “length of life”.  There is no reason why a person should not expect doctors to try as hard as practical to improve both the quality and length of life.  Wanting to have an emphasis on quality of life should not be interepted as not caring about the length of your life.  If you say that you do not want certain treatments because you don’t believe they would be good for your quality of life, this should not be interpreted as meaning you no longer care about the length of your life.  You may or may not care about the length of your life,  this is something you should feel free to discuss after being fully informed of all treatment options and all possible outcomes.  You should never be expected to make choices without first being fully informed.

I have observed doctors using the term “quality of life” and it seemed to me that what they were really meaning by saying that you need to focus on quality of life, was  – “we feel that you have used up enough of our resources and it would be best for you to go home and die quietly. We don’t think you should enquire about what your options are. We believe that you have become a burden to our system and the sooner you get out of here the better.”

They try to make you feel good about it by adding comments such as , “you’ll feel better at home”.  But home is just a change in geography and illness and pain does not go away with a change in geography.   The need for a focus on “quality of life” also comes much more quickly to the poor than to those you can afford private care.  If you can afford it, you can have more treatments that may improve your quality of life and also more treatments that may improve your length of life. Some treatments may do both.  Judging by the experiences of friends and relatives, private patients are more likely to be informed about the exact nature of their illness and how treatment options may impact on both the quality and length of life so that they can make an informed choice.  The poor are less likely to be informed.  It seems they are less worthy and maybe sometimes it is wrongly assumed that they are too old or too slow to understand their condition, or maybe doctors actually believe that it’s better for patients not to be informed.

Good information and the right to be fully informed about treatment options and all possible consequences is essential for quality of care.  It should not be for doctors to say, “we think you need to focus on quality of life “.  It should be the role of doctors to explain one’s exact state of health, likely outcomes, possible treatment options and all possible advantages and risks of treatment options. They should be helping the patient to be well resourced with information so that the patient can make their own decisions about treatment options.

It is really terrible when people have overtreatment forced upon them, however that’s something that I  really don’t think you need to worry about if you are a public patient in Queensland. Hospitals are under a great deal of resouce pressure and the last thing that hospitals want to do is spend more resources on people who are expected to die within the next two years.  Hospitals have processes and procedures in place to try and prevent resources being used up in unnecessary treatment. If you are also over 65, I believe you’ll be seen as  even less of a priority.  They may not be able to treat you as well as they’d like to , but they are able to give you a fairy tale about “quality of life”.

Real quality of life can be improved by having good medical care.  This includes access to qualified doctors and qualified nurses.  It includes being treated with respect and empathy.

It also includes being kept well informed thoughout your disease process and being able to be fully involed in treatment and care decisions.  It means having the right to reject treatment but it also means being able to access appropriate treatment and care.

https://www.facebook.com/palliativecaresupportgroup

https://australianpalliativecare.wordpress.com/2016/09/24/some-days-you-just-need-to-look-on-the-bright-side-and-count-your-blessings

https://australianpalliativecare.wordpress.com/2016/10/06/wishes-for-world-hospice-and-palliative-care-day

https://australianpalliativecare.wordpress.com/2016/10/03/should-we-rate-doctors-should-we-accept-poor-medical-care

 

The Mentally Ill Homeless Need Care – has our society lost it’s soul ?

Facing a life limiting illness is difficult enough for anyone, but even more so for the homeless.

Once upon a time , not so long ago, we had institutions.  They were not perfect, but they were home to many.  Some were good and some were of a very poor standard.  There was a lot of care but too much control. Now we have less control but very little care.

However institutions were expensive.  It was said that people would be better off in the community.  It was argued that the money would be better spent on providing community support so that these people could maintain their health in the community. However the level of community support has fallen short.

Every large city in Australia has homeless people, many of whom suffer from a mental illness.  Homelessness makes it hard to keep in contact with the necessary services.  The homeless get sick, they get cancer. I doubt they are seen as important by our resource pressured public hospitals.  They get cancer and continue to live on the streets or in shelters while attending cancer treatment programs.  

How is it that we as a society accept that people should be homeless because they suffer from a mental illness and are unable to care for themselves in a world that is harsh and uncaring ?

A successful society would provide care to those who need care.  Anyone can become homeless through illness or misfortune.  Even courageous soldiers can be wounded at war and become homeless.  No one is immune from life’s misfortunes.  We are all vulnerable but yet we overlook our fellow-man.

“…the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. “
~Last Speech of Hubert H. Humphrey

It’s not because we can’t afford to care for the sick, it’s because we don’t want to. We tend to see the sick as weak or unworthy, we are told that health spending is out of control but this is not true.

“Those who claim that health expenditure is growing out of control, and the health system is unsustainable need to look very carefully, because the data’s not showing that,” said health economist at Grattan Institute Dr Stephen Duckett. 

http://www.smh.com.au/national/health/australian-institute-of-health-and-welfare-report-card-seven-ways-to-grade-our-health-20160913-grf3cv.html

The western world likes to blame the victim for homelessness. Mental Illness greatly increases one’s chance of becoming homeless.  Many go without treatment. In Australia, anyone who goes to their GP with a headache can get 6 free sessions with a psychologist but those who have severe mental illness often go without any treatment.  Once homeless, this affects general health. There needs to be better easier ways for the sick and the homeless to access treatment.   

The homeless, like the dying and the handicapped are just as important as anyone else, yet our conscious allows us to be blind to their needs.

So long as we allow sick people to be homeless, Australia cannot be proud of itself as a nation.

https://www.facebook.com/palliativecaresupportgroup

https://australianpalliativecare.wordpress.com/2016/10/08/the-need-for-an-advocacy-service-for-palliative-care-patients-a-carers-perception

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

http://www.cbc.ca/news/canada/british-columbia/palliative-care-homeless-victoria-1.3721373