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

 

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2 comments

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