If you ask a hospice nurse or many nurses in the acute care setting about their view of death, they generally don’t miss a beat in stating, “don’t ever let that happen to me”. We have all seen the deaths that were prevented or the prolonged high tech deaths that are so agonizing for everyone. But since none of us has a crystal ball to give us future information of how and when we will die, we must rely on what information we have about our own health and plan for what might lie ahead. Personally, I am a strong believer in quality of life rather than quantity of life. Seven years ago when my 90 year old mother could not answer the question of what her wishes might be should the end be near. Her answer was “if I could have quality then I would want to live, but you and your sister should decide”. That was NOT the answer I was hoping for. My siblings and I considered ourselves fortunate when fate dealt mom its blow. She suffered a massive hemorrhagic stroke and did not remain conscious. We had time to gather and say good-bye and keep her comfortable for the short time she had still barely breathing on her own. We were all granted our one wish of a non-agonizing prolonged death for the mother we revered.
I just finished a very fascinating book. At End of Life: True Stories About How We Die is a compilation of stories by twenty-two essayists who chose to write about their experience both to share that experience and to heal from documenting their feelings and their losses. Some deaths were anticipated and peaceful and embraced by the writer as are many hospice patient deaths. Others were horrific and not only difficult to observe but tragic to resolve and recover from when it was all over.
One recurring theme in many of the essays is how many decisions needed to be made at end of life or in preparation for the end. Many questions and self-doubts about the decisions were expressed. Am I doing the right thing? Is this really what she wanted? How will I manage? Can I cope with this? Am I expecting too much – doing too much? Am I giving up on him?
By the time I turned the last page of this book, it became apparent to me once again in my long career as a hospice nurse of how important it is for all of us to listen to the dying. But it is even more important to listen and plan before the crisis and before the urgency and the need is at hand.
Each of us brings our own feelings and beliefs to our end of life experience whether a nurse, social worker, chaplain, aide or physician. These beliefs are formed by the personal life experiences, culture, religion or lack of. They are also influenced by our career experiences in healthcare or end of life care. The one thing we invariably have in common is the belief that a life prolonged is not always the preferred choice.
So as you gather with family members to celebrate Thanksgiving and a month later Christmas, consider what you would want. Ask your parents and your spouse what they would want for choices and care. Discuss it as a family and as a choice for all to be aware of. That way when the sudden diagnosis or situation happens, there are no questions, no guilt, no blaming for the choices to be made. The hospice families that have the easiest time and the best life experience with the death are the ones who planned ahead and talked about it openly. When the talking about it has happened, please document the information. The best way to do this is in the form of a living will or advanced health care directive. These are legal documents that do not require a lawyer and clearly state the signer’s wishes.