We had our meeting this Saturday (4th October)
We may be able to talk about cancer, but talking about death (for any of us, no matter what our health status) is something most of us shy away from.
We don’t talk much about Hospices either and when and how they are crucial in supporting not just those affected by Cancer but partners, friends and families also.
At this month’s meeting we had a little help from Sue Tozer a palliative care nurse from The Christie to facilitate the discussion around palliative care.
This enabled the group to receive information on what is probably the most vulnerable situation that anyone can experience during their "cancer journey".
Firstly Sue was asked by members of the group exactly when do decisions begin to be made about end of life care, how do healthcare staff know what to do and how do they know what the patient wants?
The problem being that none of us knows exactly when we will die and what will be the exact cause of our death but there are things that medical professionals do know to look out for, such as: increased frailty, tiredness, loss of weight, something that is not related to side effects of medication and does not correspond with the usual character of the patient. It’s important to remember here that not everyone affected by Cancer experiences a lot of pain so that would not necessarily be any indication of deterioration in health.
So the essence of The Surprise Question is when a health provider is asked or asks of themselves ‘would you be surprised if your patient died within the next twelve months?’
Planning for the inevitability of death is not always something that can be done smoothly but by careful planning and negotiating with the patient about their wishes, organizing the arrangements for end of life care in accordance with the patient’s wishes can be done much more respectfully and effectively.
As with anything in life preparedness is the essence of ensuring our plans are carried out in a way that we will find satisfactory so why would it be any different in death?
The sooner all of us begin to think of what we would want to happen in the event of our death the better for all concerned.
The 12 month question is something that can enable care staff to set plans into action to ensure that everything is done in accordance, not only with the wishes of the patient at heart but also ensuring that all the right procedures have been adhered to.
Gold Standard Framework
The Gold Standard Framework aims to optimize primary palliative care for patients nearing the end of their lives and it is something that all of us can ask our GPs about. It looks at what each individual patient may need, how they are doing on a day to basis and who they will need to support them. The latter being something that all of us have a say in.
About half of the group admitted that none of us had written our wills yet and considering that we have people that we really want to be there for us and who we want to support after we are gone, there are often some people that we might not. It would make sense then to make sure we get all this written down!
None of us can guarantee that our wishes will be carried out as we’d like unless we have expressly told our health care providers, our loved ones and nursing staff that we have made sure that they know what to do and who to go when we are no longer able to speak up for ourselves.
Sue shared with us that the majority of people don’t wish to die in hospital but of course the nature of being ill is that the majority of people do die in hospital. This can sometimes be avoided if we have previously made alternative arrangements for care, such as stipulating we want to end our time at home and we have someone who can help look after us.
Making a Will
A lesson we all learned was that making a Living Will is something that you can never do too early. This can help prevent any misunderstandings around who our next of kin are and make sure that those who have our best interests at heart are the ones who we give authority to and enable them to support us when we need it without unwanted interference from family members or ex-partners etc.
Not only is it important to have a Living Will but also to let everyone know we have one and where they can access it. When medical staff know a copy will be automatically filed in our medical notes.
Hindsight is a wonderful thing of course and most of us are in the position of wanting to pass on some of our hard learned lessons for the next person such as how to get best use from the NHS so it benefits us but the simple thing to remember is as Martin has frequently pointed out ‘’you are the only one who is really interested in your own health’’. Learning to take responsibility for ourselves and our health might feel like it involves a bolting horse and a stable door but the truth is it is never too early to think, research and plan what you need and what you want at every stage of our experience with Cancer.
Things we learned from today
- How do we deal with pain? Not everyone needs morphine for pain relief and if they do this may only be at end of life care but even then drugs are only given if needed. Morphine is never topped up until a patient fades away, that of course would be euthanasia and is illegal in the UK.
- How do we know when death is upon us? We don’t, but care staff often do and they know the signs to look out for.
- Don’t be afraid of death; be prepared for it (after all it will come to us all sooner or later)
- Make a Will and make sure all your wishes are addressed, take time to think about it, it may feel morbid but it will help you have piece of mind in that when the inevitable does happen everyone knows what to do, what is expected of them and that your wishes are paramount.
We hope if you’ve read this far you feel a little more informed and if there is anything that we haven’t addressed check out the links or let us know and we will get back to you ASAP.
Our Guest Speaker: http://www.christie.nhs.uk/about-the-christie/whos-who/our-senior-nurses/sue-tozer-thomas.aspx)
Patient choice in relation to end of life issues: http://www.endoflifecumbriaandlancashire.org.uk/info_health_socialcare_professionals/eol_care_tools/PreferredPrioritiesforCareprof.php
Living Wills: http://www.christie.nhs.uk/booklets/397.pdf