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”
I am asking for safeguards to protect Palliative Care Patients
- There needs to be regulatory instrument against which the Office of the Health Ombudsman can take action.
- 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.
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.