Do you ever think about what it might be like at the end of your life?
Do you imagine being in a comfortable bed, with crisp pristine white sheets, with all your family around you?
Is there an overwhelming feeling of the love in the room?
Are people sharing with you their most intimate feelings?
Are they telling you how much you have influenced their life?
How much they love you?
Are you at home?
Are you in a place that feels like home?
Do you feel respected and have the privacy you need?
Do you feel safe and secure?
Do you feel like your life has made a difference in the world?
Do you feel valued?
I find it difficult to imagine my death without all of these things … but I also know that the one person who would have been there for my death to make me feel these things would have been Seth… but he won’t be there. So it’s really a lottery to see if the end of my life works out the way I want it to be, it might but it might not and I will never know.
Seth and I had a plan for Seth’s end of life, a plan which was unsupported and derailed by the very system that was there to show us compassion, collaboration and support. Compassion was the key ingredient that was missing from our journey. Despite everything I tried to do to support and help Seth; Seth still died in an acute hospital ward where the care he received really wasn’t of a standard that it should have been.
In the last couple of days people who I have never personally met but who have been in contact with me via social media or via a mutual colleague have shared stories of the end of life care of their loved ones.
Their experiences do not match to the imagined respect, dignity and compassion that we all might want at the end of our lives. Their experiences of end of life care have left them feeling, damaged, vulnerable, angry and inconsequential.
One lady talked of being in a two bedded ward with a man that she didn’t know on the other side of a thin plastic curtain while she wanted to spend the most tender and intimate moments with her husband who was dying. Instead of tender intimate moments she was constrained by the unintentional intrusion of a stranger just other side of a few millimeters of plastic curtain. A stranger who was probably more uncomfortable with the situation he found himself in. He was feeling very poorly and knew he probably knew he was intruding on a very personal and intimate situation and given that it was a cancer ward, he was probably thinking about what it might be like when he reached the last days and hours of his life. Would he die behind a thin plastic curtain too?
Another person was so desperate to find a hospice bed for their loved one that they contacted the community palliative care team over the weekend and begged them to find a bed at the local hospice. They had been told that there were no single rooms available on the ward so they knew that their loved one would die in a shared space with other people going about their business. They even contacted the private section of the hospital site to try and book a private room. Fortunately they were able to spend the last few hours in the comfort and privacy of a hospice. They were able to say their final goodbyes in a way that was intimate, loving and unconstrained.
I have heard stories of lack of care, families who go to the nursing staff and explain that they think their loved one is dying. Stories of terminal agitation, distress for families and patients when drugs that might help are not available because a prescription has not been written.
I have also heard of families sharing their concerns with NHS clinical and nursing staff who have apologised for the care that has been received. Assurances have been given that things will change and actions will be put in place, but then when the family rings to check if there has been progress, there is no one there to take a call and multiple voice messages left are never returned.
I knew that when I shared Seth’s and my story that I wanted things to change and I know that through Homeward Bound many people have reflected and changed some really small things and also put in place some really big programmes of work. For end of life care though, there is still so much more to do.
Some things are just fundamental about respect, dignity, compassion and decency. Death should be perceived as birth is something that is planned in a person centred way, something that is intimate, special and life affirming. Death should not see the indignity of the intrusion of a stranger in a shared space; it should support and achieve the goals and aspirations of the person who is dying and their loved ones.
One last thought …. Would we expect a mother about to give birth to deliver her baby in a two bedded ward with a thin curtain between her, her husband the lady in the next bed? Or on a six bedded ward behind a curtain with people going about their everyday business?
I think we know the answer ….so why should we accept this practice when someone is dying? I know that I will always lend my voice and experience of Seth’s death to improving end of life care, it’s a big voice and there is still so much to do to influence to achieve real change.
Today I was tearful and angry. Tomorrow is another day to continue influencing the way people think about end of life care and death. Tomorrow I will channel the anger and the tears into making a lasting change.