Hello world!

Let’s talk… This blog is about death with dignity, on our own terms. It’s about empowerment and patient centred care in a continuum of choices. The focus of this site will be to create a community for people making end of life choices and their loved ones. It will provide resources, opinion pieces and articles on a wide variety of issues. Everything will be on the table: nothing will be taboo. 

Not Alone…

Having attended and presented at two International End of Life Conferences, my perspective on the needs of the dying has expanded. Over the past eighteen months, I have been fortunate enough to work with three NPOs here in Canada whose focus is on end of life rights, education and challenges. As a result, I have grown to understand the complex nature of the end of life experience for the patient and those who surround them, more fully.
Many Canadians face end of life decisions with the aid of extended family or chosen loved ones. Those family members and love ones become the advocates that offer many different forms of support to the person who is facing death. The terminally ill rely on these people for guidance and help as they make crucial decisions, often while they themselves are both vulnerable and fragile physically.

When my husband, Paul, was at this stage in his battle with cancer, he relied on me daily to help him make decisions and talk through what his choices and options were. Ultimately, only he could decide what was best for him, but he valued my perspective and memory of alternatives and events to refresh his own recollection of things. Whether it was treatment choices, when to end treatments, end of life choices, research, emotional support or managing daily living challenges, Paul asked me for clarification and understanding. This part of Paul’s life journey was all about him… his needs, his wishes, his decisions. The focus was always on Paul. I played a secondary role. I took notes and asked questions at appointments. I organized the paper work as decisions were made, called and made appointments, set up meetings and arranged for medications. It was me who did the liaison work with the Palliative Care team and doctor’s office. I was his support. We lived far from family and so, as his wife, I served Paul in this support capacity. We always had each other, and when the time came, those family members who were able, made the long trip to spend those final hours together and be by his side as he died with dignity, in the manner of his choosing.

Paul was fortunate. He had loving family and friends who cared about him. Not everyone has such an obvious support network that functions in their best interest.

Through my national and international volunteer work, I have become aware of the many people who are dying alone. These are the people, who, for many reasons, reach the end of their life and have no one – they are without the customary network. As they make this journey, some are able to reach out to others for help. These people become their support system and carry out the roles that, under other circumstances, would fall to family and loved ones. Depending on the person’s circumstance – whether they are living alone at home still or have taken up residence in an institution such as a hospital, extended care facility or hospice – these people form bonds with those service providers around them. Over time, these bonds become as strong as those of extended family. In fact, many people in this situation become so close to their care givers, that they consider them to be family. Whether these professionals are nurses, social workers, patient advocates or personal service workers, they create very close relationships with the individual who faces death. Dying is a very intimate experience. It builds singular connections and brings together people from all walks of life.

For me, Paul’s primary Palliative Care nurse and his doctor have become personal friends that I know will remain important members of my inner circle for the rest of my life. Those of us who are there to be first person witnesses at the end of someone’s life, have the opportunity form unique bonds. Afterwards, we all have the need to communicate and process our experiences. Through medical assistance in dying (MAiD) and other similar options, we have become a very unique circle. I believe, as our community grows, we will have the opportunity to work together and create a communal voice that we can bring to the table when issues are being discussed, decisions are being made and policies are being created. We are the First Person Witnesses – those who have lived experiences and understand the needs of the dying person better than any others. It is my belief that we have a vital role to play as people become better informed to make the decisions that will help them die with dignity on their own terms. I believe, working together, we can improve those options and choices for future people facing death, regardless of their age and circumstance.

MAiD – Professional Reluctance to Talk

 

 

My thoughts in response to this recent news article – this is just a drop in a very deep bucket:

Can Nurse Practitioners mention MAiD to patients?

Once again, we are being forced to look at the continuum of end of life services offered by Palliative Care staff. If all choices were presented and none were specifically recommended, the clinician is simply providing information from which a person can make an informed choice. To do less is unprofessional.

Why Patient Centred Care?

 

In this new Canadian era of medical assistance in dying, the focus is shifting away from clinician directed services and care to a patient-oriented system – a series of services and programs where the patient becomes an informed decision maker with a support team of professionals to advise and guide them. People needing Palliative Care and MAiD are quickly becoming a large portion of our population. Their health and quality of life are going to consume more and more of the resources available through our health care bureaucracy. The system needs to be prepared to deliver compassionate medical help and support services.