This seems to be something of a ‘hot topic’ at the moment, which brings about a huge amount of controversy. You may have heard and read many different articles with different points of view, and i am sure you have your own. As a Speech Therapist I deal with many people who are either in the palliative phase of their life, or being controlled by a progressive disease. Enabling someone to maintain their dignity and quality of life is something I feel incredibly passionate about. I would like to describe a situation that as Speech Therapists we may find ourselves in, which will contribute heavily to someones quality of life in their final phases of life.
A common situation that comes about for a Speech Therapist is when you visit someone with advanced dementia who has a swallowing disorder (dysphagia). This means that there is problem with their swallowing, and there may be a risk that food or fluid could go down the wrong way to the lungs, rather than stomach. Complications of something going down the wrong way can be chest infections, pneumonia, choking and even death. But having said this, some people are able to tolerate things going ‘down the wrong way’ and do not suffer said complications. It is understood that the risk may be reduced if someone is mobile, independently able to feed themselves, and has good oral care.
It may be that the person has had a swallowing assessment, and no benefit was found from modifying their food and fluid, strategies were not able to be deployed, and specialist equipment were of no benefit. Therefore, concludes that the risk of things going down ‘the wrong way’ cannot be eliminated.
When someone has a swallowing disorder they may or may not be aware of it. There are obvious signs such as coughing, choking, eye watering and dribbling of food/fluids. But they may also be quite unaware, and show no obvious signs.
Now, in this situation, you have two choices :
Accept the risk that food/fluid may go down the wrong way and allow that person to continue eating and drinking, given that it may be one of the few things that they enjoy and provides them with an improved quality of life. In this case, as a Speech Therapist I would provide recommendations of what is ‘safest’ to eat and drink, and provide any strategies that may be of benefit.
Place them nil by mouth, and insert a permanent feeding tube in their stomach. This would mean that they no longer eat or drink anything, are no longer taking part in the social activity of meal times that break up the day, and have a foreign object inserted in them, which they may or may not understand.
These are obviously very complex decisions to make, which consider many other factors, and not decisions we make alone, but with the input from the medical team, patient and family. But it poses an interesting question of whether we accept a risk to improve quality of life, or eliminate risk but certainly restrict quality of life.
I feel that from my experience, a persons viewpoint may be different if you were to ask this question generally, and if then again if a person’s close family member were to find themselves in this situation. Many people feel that they do not want to prolong suffering, and to allow their loved one to enjoy the time they have left. Other people may only see one goal : keeping a family member alive at any cost.
There has been many well documented cases of people wanting to die with dignity.
For example, you may remember a well publicised legal fight for Tony Nicklinson who suffered a stroke and consequently locked in syndrome. This usually means that you are completely paralysed and unable to speak or move, but remain conscious and able to think and reason. You may be able to move your eyes, and often this is used as a method of communication.
He reported that he found life ‘dull, miserable, demeaning, undignified and intolerable’. He appealed to the courts to end his life, but was consequently denied, causing devastation to himself and family. In his final days, he contracted a pneumonia, refused to eat and drink and denied treatment which ultimately led to his death. This was very likely a very unpleasant and devastating way to die. To read more in depth, visit http://www.dailymail.co.uk/news/article-2191944/Locked-syndrome-victim-Tony-Nicklinson-dies-aged-58-refusing-food-contracting-pneumonia.html.
Another more recent well publicised example was that of Brittany Maynard who at 29 discovered she had an aggressive brain tumour. She was young, newly married and planning to have a family when she learnt the news. She was given six months to live, and was advised to have full brain radiation, which comes with a long list of side effects. She is reported to have deliberated this with her family and after deciding that because there was no curative treatment, and the time that she had left would be depleted of any quality, she chose to end her life, to maintain her dignity.
She and her family were forced to move to Oregon, which is currently 1 of 5 states in America that has authorised death with dignity for terminally ill patients. She was able to collect the medication that would end her life when she chose, and take it when she felt ready, in the company of those she loved and choise. This enabled her to maintain her dignity, and not suffer for weeks, or months as her body began failing, leaving her family to watch her slowly dying. To read more, follow http://www.independent.co.uk/news/world/americas/us-woman-brittany-maynard-explains-why-shes-choosing-to-die-on-1-november-9784119.html
To read more on this subject and find out how you can support this campaign in England, please visit http://www.dignityindying.org.uk
For advice and help on enabling your relative maintain their quality of life, and how to make communication and eating and drinking more comfortable, please get in touch at www.speakologyslt.co.uk
