What Kind Of Care Do Most People Want Once They Know They Have A ‘Life-Limiting’ Or Serious Disease?

A life-limiting disease is one which is incurable and which will cause a person to die if nothing else does first, such as:  Alzheimer’s dementia, cancers, end-stage heart or kidney failure.  A serious disease is one which carries the risk of sudden death or prolonged disability.

There have been studies published which have asked patients and families what is important to them when facing such conditions; and, by implication, what do they want from their doctors.  The following are those things patients felt were most important.

  • Pain and symptom control.  They want any pain, shortness of breath, nausea, etc. controlled.
  • Avoid inappropriate prolongation of the dying process.  Once it appears that a patient is approaching the last few weeks of life, they don’t want their dying “dragged out”.
  • A sense of control.  Everyone wants to feel that they are ‘captain of their own ship’; that they have some control over the healthcare decisions being made about them, so that they will not have things done which will cause them to suffer or which they don’t feel comfortable with.  The most basic principle in ethics is the Right of Autonomy – the right to choose what is done to our body.  For example, a person has the right to refuse a treatment even if it means they could die without it.  [but, that doesn’t mean a person has the right to ask for unreasonable and futile treatments!)
  • Included in decisions & to be listened to.   This is tied to the ‘sense of control’ above.  They want their doctors and other health providers to listen to them, provide them with options they can understand, and help them make decisions.
  • Honest information.  They don’t want to be deceived or be given false hope—something which may be the only thing worse than ‘no hope’.  They want to know the risks of any drug or procedure—even if it’s only a 1 in 100,000 risk.

A hospice team will help ensure that all of the above preferences are being met, enabling patients and families to make decisions more in tune with what they value.