The need for an advocacy service for Palliative Care Patients … a carers perception

Previous to this experience, my family had always received excellent health care from Queensland public hospitals and I had no idea that the situation would be different when it involved cancer. 

When my family member went into hospital for a cancer operation, I was very naive and assumed that the hospital would do the best that they could for him.  

I now realise that our situation was not unusual. 

I have had the opportunity during and after his illness to speak with many families in similar circumstances and now understand that we are not alone in having a very poor experience. It seems that it is  normal for some Queensland hospitals to treat cancer patients in a manner far less than satisfactory. 

When faced with unsatisfactory treatment, there is  nowhere for patients and their families to go for assistance.  Most are forced just to accept that the health system is broken and Palliative Care patients are treated as an unwanted burden. 

We seem to have a situation where doctors who have never seen the patient decide whether or not they are likely to die within the next 2 years.   These patients are then  coerced into accepting Palliative Care referrals and given a very strong message that they are not welcome at the hospital if they get any new health concerns. 

People are missing out on appropriate treatment in the last few years of life. While recognising that funding is not unlimited in nature, it appears that healthcare is being severely rationed in Queensland and not given the priority it deserves.   The authorities are not informing the people as to how their health care is affected. 

From my experience, it seemed that Palliative Care service doctors are not only often very inexperienced, they also seem to lack the qualities such as good communication skills and empathy which are necessary to provide a high quality service. 

When faced with unsatisfactory service, there is no means at all for palliative care patients and their families to get any assistance.  They have no voice at all.  The hospital staff and hospital liaison officers in practice appear to just ignore palliative care issues as they consider them unimportant and not worthy of anyone’s time.  This is also true for the Office of the Health Ombudsman.   

In our case, it took me two years to attempt to get a response from the health service and then from the Office of the Health Ombudsman.  I believe most palliative care patients would be dead before they got any sort of response from the Office of the Health Ombudsman. 

If a family member questions the treatment, or lack of treatment, they are falsely labeled as being unable to accept the prognosis  and are treated in the most demeaning and disrespectful manner.  My experience was that senior hospital doctors seemed to be very arrogant and insensitive.  

I have also attempted to get help from Palliative Care Qld and Palliative Care Australia, these seem to only advocate for service providers. Health Consumers Qld said they have no funding to help and it seems their purpose is to serve QLD Health . The Cancer Council was not interested and Carers QLd  had no suggestions

Given the above points, I believe that it is imperative that there is a need for an advocacy service for Palliative Care patients, and this service needs to be delivered in an efficient, timely and sensitive manner.  

https://www.facebook.com/palliativecaresupportgroup

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

 

 

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5 comments

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