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.

Photo by andreas160578 via Pixabay

Bucket List -Overflowing with the Ordinary.

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

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

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

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

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

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

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

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

 

Photo by Coleur via Pixabay

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/

 

Death as a Normal Part of Life

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

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

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

Excuses should never be made for poor medical care.

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

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

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

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

Photo by (bfleeson) Ben Fleeson via Pixabay

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

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

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

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

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

 

The Burden of Death

Death is a normal part of life.

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

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

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

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

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

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

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

Photo by Michael Gaida via Pixabay

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

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

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

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

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

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

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

 

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

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

 

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/2017/04/25/scarred-by-palliative-care/

https://australianpalliativecare.wordpress.com/2017/03/21/health-minister-cameron-dick-fails-to-respond-to-an-open-letter-on-the-grounds-that-public-hospitals-are-statutory-bodies-that-are-independent-and-locally-controlled/

Scarred by Palliative Care

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

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

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

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

http://thecaregiverspace.org/dying-home-not-cracked/

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

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

Health Minister Cameron Dick fails to respond to an Open Letter on the grounds that public hospitals are ” statutory bodies that are independent and locally controlled” .

..

4  March 2017

An OPEN LETTER  to Hon Cameron Dick,  Queensland Minister for Health  

Dear Hon Cameron Dick,

I  met with you on 11 August 2016, at that meeting I asked you to respond to a very inappropriate letter that I have received from the then CEO of xxxxxx Hospital, Dr xxxxx.   I have also written numerous times asking for a response to that letter and also asked for a response as to why my complaint regarding a senior doctor was not taken seriously, as the CEO refused to look into the complaint on the grounds that the doctor had a good reputation. This was an unprofessional and illogical reason.

Despite numerous letters to you, I had no response.  Finally I received a letter dated 20 December 2016.  But this letter does not even mention the inappropriate letter from the hospital CEO or the failure of QLD Health to look into my complaint regarding a senior doctor.   Please provide a response to the letter from the hospital CEO.  This letter was very aggressively written and was highly defensive.  I believe the intent of this letter was to belittle me and threaten me into not talking further about the poor care received at xxxxxx Hospital.

Regarding the need for an advocacy service for Palliative Care patients, I am not surprised at your lack of interest , despite you having been quoted as saying you want QLD to have the best Palliative Care service.  Your letter contained useless political spin, I have seen no evidence of anyone in Queensland wanting to improve Palliative Care services.

You have communicated with stakeholders, but these represent service providers that make money from Palliative Care.  For example, the then President of Palliative Care Queensland was also the Director of St Vincent’s Hospital, the organisation with the most to gain financially from palliative care services to public patients.  The current president refuses to speak to me, I assume because I am just a health consumer and it is health providers that provide funds for Palliative Care Qld.

You have also communicated with Health Consumers Qld which is an organisation that is funded by and supports QLD Health.  HCQ just told me they have no funding for palliative care.  HCQ provides an illusion of  interaction with the community through a system of carefully chosen consumer representatives who work for health services and filter information from consumers.  There is no means available for a consumer like myself to have any voice or give any feedback.  You will tell me there are surveys, but no one tells consumers like myself about surveys, I assume stakeholders inform consumers who have had a positive experience, and so look after their own interests.

I have found no evidence of any desire by yourself, the Health Department  or QLD Health to improve palliative care services.  It seems the focus is on using palliative care services in such a way as to reduce hospital costs as much as possible and unfortunately this is often at the expense of patients.

I don’t believe that there is anyone in authority in QLD who has any genuine interest in improving the care of dying patients.  If I am wrong, please pass on the following link, where I have identified 9 points that could lead to improvement. The article also contains references to the CEO’s letter.

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

I have also had a letter from the Director General of QLD Health, Mr Michael Walsh and he refuses to respond to the letter from the hospital CEO or the CEO‘s refusal to look into a complaint that I made regarding a senior doctor except to say that the letter was “strongly worded”.  This was genuine feedback and it should have been taken seriously. 

Please provide me with a response regarding the letter from the hospital CEO  and please also look into my complaint re Dr xxxxx xxxxx.

This letter was sent to Hon Cameron Dick on 8 January 2017 and I have had no reply.(despite contacting his office a number of times to ask why I received no response ).

Your Sincerely

Ignored Queensland Voter

————————————————————————–

A letter dated 08/03/2017 was received from the Hon Cameron Dick excusing himself from responding as public hospitals are ” statutory bodies that are independent and locally controlled” . He also wrongly stated that the issue had been dealt with by the Health Ombudsman. This issue is outside the scope of the Health Ombudsman.

17  March 2017

Dear Hon Cameron Dick, 

RE Your letter dated 08/03/2017 

I received your letter and note your refusal to respond to the issues that I had raised.   Having conveniently made public hospitals , ” statutory bodies that are independent and locally controlled” does not change the fact that you are ultimately responsible for the function of public hospitals. 

When it suits you, you often comment on public hospital issues. There is no excuse for you not providing a response when the hospital system is not seen to be working well.  I have not been able to get any reasonable response from the hospital or the hospital board, therefore it is appropriate that you as Minister for Health provide a response and look into the issues. 

You  claimed that I had received a written response from the hospital board. Mr xxxxx  xxxxx wrote and told me that the board could see nothing wrong with the extremely inappropriate letter that I received from the hospital CEO.  I do not believe anyone would consider this a serious response.  It was just the board’s way of saying that they refused to look into the matter. 

In respect to my complaint re Dr xxxxxx,  

1. It was wrong of you to say this issue had been to the Health Ombudsman, it had not. Dr xxxxxx was not mentioned in my complaint to the OHO.
2. My complaint re Dr xxxxxx is outside the scope of the OHO as Dr xxxxxx did not provide any direct health treatment.
3. My complaint re Dr xxxxxx was regarding what I perceived to be the very rude and arrogant way in which Dr xxxxxx responded to my feedback regarding the hospital.  Please  read my previous letter re Dr xxxxxx.
4. The OHO has told me that they have no power or influence regarding the way in which health services choose to respond to complaints such as this one.
5. You are ultimately responsible for health care in Queensland and when the system fails to ensure that people receive a reasonable response from health services, it is therefore appropriate that I request a response from yourself when the health service has treated me in what I perceive to be a very rude and disrespectful manner.  The health service claims that they welcome feedback yet I seem to have been insulted and belittled because I attempted to give genuine feedback. I cannot understand why you refuse to respond.

Please provide a response regarding the very inappropriate letter that I received from the hospital CEO, it was very aggressive and extremely defensively written, it contained much misinformation  and irrelevant information clearly demonstrating that the CEO did not check the facts before writing the letter but based it on wrong assumptions. 

I also ask that you look into the very poor standard of care that public hospital cancer patients can receive in Queensland and the failure of hospitals to inform patients as to how much their care is being affected by resource pressure and healthcare rationing. 

Yours sincerely 

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

An OPEN LETTER to Hon Cameron Dick Queensland Minister for Health

 

4  March 2017

An OPEN LETTER  to Hon Cameron Dick,  Queensland Minister for Health  

 

Dear Hon Cameron Dick,

I  met with you on 11 August 2016, at that meeting I asked you to respond to a very inappropriate letter that I have received from the then CEO of xxxxxx Hospital, Dr xxxxx.   I have also written numerous times asking for a response to that letter and also asked for a response as to why my complaint regarding a senior doctor was not taken seriously, as the CEO refused to look into the complaint on the grounds that the doctor had a good reputation. This was an unprofessional and illogical reason.

Despite numerous letters to you, I had no response.  Finally I received a letter dated 20 December 2016.  But this letter does not even mention the inappropriate letter from the hospital CEO or the failure of QLD Health to look into my complaint regarding a senior doctor.   Please provide a response to the letter from the hospital CEO.  This letter was very aggressively written and was highly defensive.  I believe the intent of this letter was to belittle me and threaten me into not talking further about the poor care received at xxxxxx Hospital.

Regarding the need for an advocacy service for Palliative Care patients, I am not surprised at your lack of interest , despite you having been quoted as saying you want QLD to have the best Palliative Care service.  Your letter contained useless political spin, I have seen no evidence of anyone in Queensland wanting to improve Palliative Care services.

You have communicated with stakeholders, but these represent service providers that make money from Palliative Care.  For example, the then President of Palliative Care Queensland was also the Director of St Vincent’s Hospital, the organisation with the most to gain financially from palliative care services to public patients.  The current president refuses to speak to me, I assume because I am just a health consumer and it is health providers that provide funds for Palliative Care Qld.

You have also communicated with Health Consumers Qld which is an organisation that is funded by and supports QLD Health.  HCQ just told me they have no funding for palliative care.  HCQ provides an illusion of  interaction with the community through a system of carefully chosen consumer representatives who work for health services and filter information from consumers.  There is no means available for a consumer like myself to have any voice or give any feedback.  You will tell me there are surveys, but no one tells consumers like myself about surveys, I assume stakeholders inform consumers who have had a positive experience, and so look after their own interests.

I have found no evidence of any desire by yourself, the Health Department  or QLD Health to improve palliative care services.  It seems the focus is on using palliative care services in such a way as to reduce hospital costs as much as possible and unfortunately this is often at the expense of patients.

I don’t believe that there is anyone in authority in QLD who has any genuine interest in improving the care of dying patients.  If I am wrong, please pass on the following link, where I have identified 9 points that could lead to improvement. The article also contains references to the CEO’s letter.

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

I have also had a letter from the Director General of QLD Health, Mr Michael Walsh and he refuses to respond to the letter from the hospital CEO or the CEO‘s refusal to look into a complaint that I made regarding a senior doctor except to say that the letter was “strongly worded”.  This was genuine feedback and it should have been taken seriously. 

Please provide me with a response regarding the letter from the hospital CEO  and please also look into my complaint re Dr xxxxx xxxxx.

This letter was sent to Hon Cameron Dick on 8 January 2017 and I have had no reply.(despite contacting his office a number of times to ask why I received no response ).

Your Sincerely

Ignored Queensland Voter