Palliative/End-of-life care refers to health care, not only of a person in the final hours or days of their lives, but more broadly care of all those with a terminal condition that has become advanced, progressive, and incurable.
When people think of their final moments they hope to see family and friends around them, in a warm, relaxed atmosphere, where sadness is overshadowed with happy memories shared and life for those around goes on as they close their eyes and pass on.
Sadly this is often not the reality. The medical needs take over from the social and emotional ones and come last. End of life care is so important for all involved. For the families, lasting memories will be made at this time, good or bad. It is the role of nurses and carers to make sure that people have a "good death" and the family can accept it and feel comforted that their loved one had the best last moments possible. And this care shouldn’t end with a death certificate. Families should know the loss is felt by the carers too, the feeling of grieving alone should not be one experienced by anyone!
A wonderful quote from Donald MacCaskell from Scottish Care is that “Palliative/End of Life Care (or PEOLC) should be a patient led dance. We should support, follow the direction we are given and occasionally guide when the dancer loses their way but inevitably we are being led through the process by those receiving the care as it should be personal to them. Each person receiving PEOLC will have a different dance to different music and so it must constantly change”
There is often much debate around whether it is better to die “at home” rather than in a hospital, care home or hospice but it is my belief that “home” isn’t really a building but more of a feeling. A feeling of being safe, loved, and comfortable. This “home” feeling can be and should be replicated in PEOLC wherever it may be. Surround the patient with love, warmth, family/friends, music they know and love, their belongings, home comforts such as their own bedding (which will hold familiar smells etc which can be all important to relaxation and reduced anxiety) and the feeling of “home” can be wherever they are. Home doesn’t necessarily mean the where but the who.
The Scottish Partnership for Palliative Care (SPPC) is a collaboration of organisations involved in providing care towards the end of life in Scotland. The organisation realises the importance of effective cross sector, multi-skilled interactions with this process.
Of course at this stage of life there is a need for medical intervention for pain relief, and other symptoms which can occur from the body naturally shutting down slowly such as dehydration, infection or delirium but in my experience the best offering we have at this sad time is our own time. Just be there. Be there to listen, to dry tears, ease worry and fear.
Regardless of our own beliefs we must fully embrace the person receiving PEOLC’s beliefs and desires for this time. Spiritualism is often enhanced at this time due to fear of the unknown and hope that the end of this life is not all there is, faith is something which gets people through the most difficult of times and this is very important for them even when faced with death.
The name palliative or end of life care can deceive many into thinking that this only occurs days or hours prior to the actual death, but this care can last much longer and should be planned out long before it is required. The main reason for this planning is person centred care. Caregivers should know who should be there, who should be notified, what would the patient want at this time, even if they have reached a stage where they cannot explain this themselves.
Often in care homes, hospices or hospitals it’s difficult to forget that these are businesses or services and when one bed becomes empty it will be filled again quickly. But as a good caregiver this should not be the end of your connection with the family members. Care, and advice should continue over the first few weeks after the passing as we are experts in this field and are faced with it every day. Death becomes part of life and although painful becomes something we accept more readily. We can use this learned strength to support people at their saddest time and help ease some of the stress and pain by being considerate to their needs and supporting them towards a funeral. Sharing photos and stories of their loved ones last years or months in your care can often help ease guilt showing that their loved one was also loved by you, and that they lived a happy and content life while in your care.
The biggest lesson for us all when faced with palliative care, be it as a carer, a nurse, a family member or friend is this – Do not let your own fear of death hide you away from the person at the centre of it. This is the time they need you the very most. No one needs training or experience to give wonderful palliative care, one only has to do just that, CARE! Most people in the world’s biggest fear is to die alone. As carers who provide palliative care it is our main focus that this doesn’t happen. Just be there! Hold hands, wipe tears, sing songs, read poetry or the bible, knowing that these small actions will mean so very much. All the medicine and technology and money in the world can’t replace Kindness, compassion and dignity. Provide these and you will have done the best you can.