Anyone who has been through the experience of being with a loved for their final months, weeks, and days know how very difficult and emotional this can be.
One type of experience leaves a feeling that a loved one having died a “good death”, living life on their terms, surrounded by loved ones and with a sense of peace. The other experience can be when there have been medical heroics and the loved one had no quality-of-life. They may not have had any of the aspects of life that make life worth living. In these cases, there can be a sense it was a “bad death”, with a lingering sense of sadness and guilt for the survivors.
The difference between these experiences can be having had “the conversation” about end-of-life choices.
During my lifetime, I have had the honor of being a part of this process with loved ones a number of times. Recently I heard that one of our very elderly cousins was in the midst of her transition. I was able to be there with her and her daughter as she passed away very peacefully. In talking to her daughter, I saw how beautifully her family had listened to their mother and honored her wishes for how she wanted to live her last days here on earth.
My cousin had been on a feeding tube because of the danger of choking but this was not the way she wanted to live. When all three of her adult children were in town, they had the conversation with her, exploring the medical options, and how that would change how she could live. They knew her well and decided with her that she would eat actual food, and the tube was removed. What a relief that was for her!
They decided with her that she would be under hospice care, and leave this earth in the most natural way possible. She had a few more months to enjoy her family, including a new great-grandson, enjoying meals with her loved ones. In fact, just four days before her final day, she shared a feast with them. She ate more than they had seen her enjoy for a long time. What a celebration for all of her family.
She slipped out of this world in a very peaceful manner. This would not have been possible if it weren’t for this loving family having had “the conversation” with her. Ninety percent of people say that talking about end-of-life care is important but only 27% have actually done so according to a national survey done by the Conversation Project in 2013.
The Conversation Project
In 2010, Ellen Goodman, her colleagues with a group of media, clergy, and medical professionals, gathered to talk about the “good deaths” and the “bad deaths” within their circle of loved ones. Out of this came the Conversation Project. Their belief is that these conversations need to be started around, “the kitchen table – not the intensive care unit – with the people we love and before it’s too late.” It is about communicating with your loved ones about what their desires are as they approach the end of their life.
There are so many decisions that need to be made during this time. Emotions can run very high and there are very high stakes. The Conversation Project’s website has many stories people have shared of their personal experiences. It has much good information, including pdf booklets that you can download at no cost. There is a Starter Kit, and How to Talk to Your Doctor Guide, and a Pediatric Starter Kit. The website walks you through the process from preparing what you need to think about and do before you have the conversation, through how to do the process. There are scales that are provided to help bring out the values of the individual. Each person has a unique process.
Hopefully, this will only be the beginning of other conversations over a period of time. As we age and circumstances change, your needs and wishes will change. Our culture is very uneasy when talking about death. Yet those conversations allow people to complete what they want to share with loved ones. Research has shown that family members who have advanced directives and have had these types of conversations with their loved ones have an easier time with the grief process after their loved one has died.
Talking with Your Doctor
It is a hard conversation for anyone to have within families. It can be a difficult conversation for a physician to have with their patients. As a doctor, their experience over the years has been finding a diagnosis, and developing ways to help with treatment.
In 2016, a new benefit has been added for Medicare recipients to help you have a conversation with your physician about end-of-life wishes for medical care for yourself or a loved one. With these changes in Medicare, a physician can talk to the patient, family member, or surrogate to discuss advance directives with Medicare support. In fact, there is a code that the physician’s office can use for the 2 appointments (each appointment can be up to 30 minutes long). This can open up awareness of the medical community and smooth the way for this very important topic to be discussed openly with professional medical personnel.
Think through some aspects of your wishes before you have this conversation with medical professionals. The Conversation Project’s Talk to Your Doctor Guide is a great resource. Some of the areas covered in this free guide are:
Something not covered in this guide is a document that is called the DNR (Do Not Resuscitate). If you decide this is an important document to have for yourself or your loved one, discuss this with your doctor and have them sign with you. In most states, a doctor’s signature is required.
In addition to the conversations with family and medical professionals, it is also important to do the necessary paperwork to make this time easier for those involved. This will be discussed in the next article in this series.
I’ve had the experience of being part of these decisions numerous times during my lifetime. It is important for all of us to communicate our wishes, and it is not always just with the elders in our families. My first husband was diagnosed with cancer at age 41. Thank goodness, he was not afraid to talk about death or what his wishes were for care. I was so very thankful that we could talk over so much of what his fears and his desires were. I was at peace after his death, knowing he had lived his final days the way he had wanted to.
You may be uncomfortable initiating these conversations with the loved ones in your family. You may be pleasantly surprised to find they are relieved to be able to talk about things that have been on their minds, too. If you are in the older generation, it will help your younger loved ones know you are thinking about them, and planning for the end-of-life issues.
Invite your loved ones to sit down and have this conversation today, perhaps over dinner together. Everyone will be relieved when you do.
Resources:
Caring Conversations (www.practicalbioethics.org) The Center for Practical Bioethics provides extensive resources for having these end-of-life conversations.
They can also be reached at:
The Center for Practical Bioethics
1111 Main Street, Suite 500
Kansas City, MO 64105-2116
Phone: 800-344-3829 or 816-221-1100
The Conversation Project (www.TheConversationProject.org) – this project has been in collaborations with the Institute for Healthcare Improvement (IHI) since 2011 in bringing a step-by-step process to the public in having these important conversations.
They can also be reached by mail or phone at:
The Conversation Project
20 University Road, 7th Floor
Cambridge, MA 02138 USA
Phone: 617-301-4868
Author: Linda Marsolek
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