There has been so much publicity given to palliative care and the need for people to talk more about death and to see it as a normal part of the life continuum.
However as a carer I know that dying early from cancer or some other dreaded disease is not a normal part of the life continuum. I have tried to talk about death but I’ve learnt that despite the wonderful theories, health professionals are not willing to talk about death. Some people like to fight their illness and squeeze every last drop of life out before they give up, sadly they are often told to be sensible and just die as quickly, quietly and as cheaply as possible.
It seems that once it is decided that one’s illness will lead to death, then one is treated as somewhat less than human. There is no longer any need to keep them informed or allow them to make choices. There is no need to treat them further, just assume that some one else is looking after them. They are considered a non person even though it may be months or years before they are expected to need end of life care.
Public hospitals see palliative care patients as a burden to the system and they make sure the person understands that they are a burden so that they will be less likely to seek treatment for medical concerns.
Palliative care specialists seem to see their role as convincing governments and health services that they can save money if patients are referred as early as possible. This leads to more money being invested in palliative care and good career prospects for palliative care professionals.
Meanwhile the person is in pain. They are not important and can’t expect to see a doctor. The doctors are all busy promoting the palliative care cause. They might wait days to see a trainee doctor and sometimes have to rely on nurses. In Australia most people take access to family doctors for granted but palliative care patients often do not have access to doctors.
Patients are kept out of sight with no voice. They are told they will wish to die at home and this is said in such a way to infer that there really is no other choice as one should not burden the system more than necessary.
Some family doctors ask if they will soon not have a role in palliative care. The truth is treating palliative care patients is hard work and not very profitable so it’s best to just keep them out of sight and convince oneself that they are getting “expert care” from palliative care teams. Meanwhile the patient is still in pain.
It does seem that Palliative Care can be an excuse for doctors to abandon their patients. In our experience public palliative care patients are pushed on to early palliative care and are expected to rely on very inexperienced doctors, sometimes just nurses. Being coerced onto palliative care too early has a devastating effect on one’s hope. They will tell you anything to get you to agree to a palliative care referral. They promise you “expert care” but this only leads to disappointment. Some family doctors are lazy and discard patients as soon as they have a palliative care label. This is a system failure to provide good medical care to the poor.
Our governments see care for the poor as an unwanted burden on the system. All patients should have access to qualified doctors and this is not happening in Palliative Care. Palliative care doctors that we met were very inexperienced and had very poor communication skills. It is extremely stressful to watch family members denied good care. I would wish that many family doctors become involved in Palliative Care which should be a major function of any family doctor’s practice.
People need experienced doctors who they know and trust. In my grandparents day people took comfort from knowing their trusted family doctor would see them if they were sick and in the rare event that they needed home nursing, they would be visited by qualified nurses to carry out care. Today people can look forward to suffering at home with the help of carers who often struggle to communicate in English and an occasional visit from palliative care nurses who tell them that everything that can be done is being done.
Palliative Care specialists celebrate that another person has chosen to die at home.
Meanwhile the patient is still in pain and families wonder why there is no better care.