A guide for making end of life decisions

If given a choice, most of us would want a “good death.” But what that means is all too often left up in the air until a crisis strikes or the sick person is no longer able to communicate his/her wishes.  

Palliative Care, an educational series from HammondCare

The approach to end of life, for whatever reason, can be a daunting time for everyone involved. However, many people - patients, their carers and family alike - are often surprised about the valuable and positive role that palliative care can play in improving quality of life and making this time more manageable.

Palliative care assists to improve people’s quality of life during the course of a progressive life-limiting illness. This care isn’t just about pain relief medicine. It is more holistic. It also addresses the psychological and spiritual aspects of care, providing support to help patients live as actively as possible.

Being well informed about palliative care can make this journey more manageable and help reduce the associated fears and concerns. That is why HammondCare is launching a series of articles to guide people on how palliative care can improve the quality of life for patients, their carers, and families.

A new topic will be posted each month and we hope you find them useful in your own journey.

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A guide for making end of life decisions

How to make end of life decisions

If given a choice, most of us would want a “good death.” But what that means is all too often left up in the air until a crisis strikes or the sick person is no longer able to communicate his/her wishes. When that happens, spouses, adult children, siblings and others find themselves in the unenviable role of surrogate decision-makers. It can be very hard to try and work out, sometimes with very few facts and under very emotional circumstances, what people would have decided to do if they were able to choose.

An effective way to plan for the end of your life is to develop an advance care plan in conjunction with your doctor or nurse. It is preferable to do this before you get sick. But if you find yourself in hospital or any other care setting, it isn’t too late to do this, it just takes a bit more thought.

Ideally, you would discuss your preferences for life-sustaining treatment with your family before you are seriously ill.

If you can, it is wise also to formally appoint an enduring guardian and let them know what your wishes are. Over-riding all of this you should seriously consider writing an advance care directive.

The critical element for all of this is to have the conversation about it all with those who love you, and of course while you still have the ability to make decisions.

Certain specific things to consider
  • What is the goal of care – that is, what are you hoping the healthcare team looking after you will achieve? Ask them to be specific.
  • Treatments at the late stage of illness are aimed at reducing symptoms, never at shortening life or hastening death.
  • Some strong painkillers may make people sleepy – don’t be concerned by this. If you ask to not be sedated, then your care team will respect that.
  • Using drips or other interventions to provide fluid and food has its own possible disadvantages and discomforts. For example, those related to having tubes in your arm or elsewhere. Consider carefully what you want the goal of this sort of treatment to be.
  • Talk with your family about the possibility of being resuscitated using cardio-pulmonary resuscitation. You will almost certainly be asked about your views on this in the late stages of disease. 
  • If you have an advance care directive, make sure everyone knows where it is.

In some circumstances, for example where the patient’s condition suddenly deteriorates and their wishes are not known, a treating doctor may provide medical treatment without either consent, if the treatment is necessary as a matter of urgency. Such situations might be to: save the patient’s life; prevent serious damage to the patient’s health; or alleviate significant pain or distress. If you make your wishes clear beforehand then this situation will not arise.

In summary, the most important thing to do is to have a conversation with your family and loved ones so you are all quite clear what your wishes are. Of course those wishes may change as circumstances change but having the first conversation is the hardest.

Much of the information listed here can be found in fuller detail in NSW Health Guidelines for end-of-life care and decision-making found here.

If you have benefited from this information and would like to share it with others, then please do – we want more people to feel comfortable facing the issue of palliative care.

For further information on HammondCare’s Palliative Care services, please contact us on 1800 826 166.