How To Choose The Right End-Of-Life Care?
End-of-life care is not an easy conversation to have, either with yourself or your family. Timing is tricky as until we and our loved ones can accept the inevitability of death that conversation is often off the agenda.
But that conversation with your next of kin is one of the most important to have, how can you know someone's actual wishes if you haven't talked about it? Rather than skirt around the subject, why not ask the question, tactfully? It might actually come as something of a relief to that person to finally have an opportunity to discuss it. It's possible they were finding it hard to volunteer the information and appreciate the chance to talk openly about their final wishes.
It is far less stressful for close family to know about their loved one's preferences and wishes for end-of-life care. It can act as a real comfort to know they are doing the right thing for them at the end. Most people want to have the opportunity to help their loved one and care for them properly in their final hours. It can cause stress and anxiety if the process is chaotic, not well managed or just unknown.
One of the most important things is to proceed based on correct information rather than guesswork and supposition. So, what is the difference between end-of-life care and palliative care?
Palliative care refers to care which offers the patient the best quality of life whilst they deal with a disease which may be incurable, chronic or life-threatening. A good example of this would be serious arthritis. Palliative care focuses on pain relief and aims to give each patient the best possible quality of life without curing the underlying condition or disease. Palliative care does not have to be associated with death and dying but it is a term used a lot in this context.
End-of-life care is about a care plan for people who are in the last few months or weeks of their life. It is about promoting dignity and relieving pain, enabling them to live their best life each day until the end comes.
The comfort of planning ahead
The biggest fear is of the unknown. Talking about what will happen with your loved ones will take away some of the worry and anxiety. It will help reassure your loved one that their wishes will be respected.
End-of-life care can take place at home or in a hospital, care home or hospice setting. Most people express a preference to die at home where they can be surrounded by familiar things and faces. Dying at home needs planning with your GP and often local, specialist nurses are involved as well if medical care is required.
Some people pass away in hospital if their medical needs are very complex. The hospital will be able to manage pain relief and other supporting medication. Some hospitals have dedicated wards which specialise in end of life care. Their staff can help you fulfil your loved one's wishes in their final days.
Not all care homes are nursing homes which means they can't always offer the level of medical care that a terminally ill patient may need. If care needs are not medically based, then there is no reason why a resident cannot remain in a care home if they want to. Not all care homes have staff trained in end-of-life care so this is an important question to ask.
Hospices are designed solely for the provision of end-of-life care and usually look after people with medical needs to avoid them staying in hospital. The range of services and activities a hospice can offer are diverse and varied. Most hospices offer day support for terminally ill patients with full-time care towards the end for those most in need or whose families are unable to support them.
How to establish a plan
The two key considerations for most people are where they should die and what do they want to happen at the end. For example, some people have clear opinions about the level of medical intervention and treatment they want. The debate about location will often also involve who they want to be with them at the end
The level of nursing care required may limit choices but most healthcare professionals will always work to accommodate someone's wishes if at all possible. Healthcare services within the community vary enormously depending on where you live so do your research. Find out what is available first before having theoretical conversations without the facts to hand.
It is more than likely that your loved one may change their mind about what they want – this is perfectly normal. Coming to terms with death is a journey and it means they are thinking about the options carefully. A change in their condition might lead to a change in their preferences so don't view their opinions as set in stone. Things don't always go to plan and sometimes events intervene and can alter what is possible or practical for a loved one in their final days. But knowing someone's wishes is over halfway towards fulfilling them, whether in whole or in part.
There are lots of online resources which can provide more detailed information and plenty of people who you can talk to for further advice and guidance.
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