Help to live before help to die!

In Sweden alone, over 16,000 people lost their lives in the pandemic. Yet assisted suicide for people with extensive disabilities and terminal diseases is the current debate. I've been living with a respirator for over 60 years. I love my life. Let not other people determine whether your life is worth living!

Help to live before help to die!

Björn Natthiko Lindeblad, the former business leader, Buddhist monk, author and lecturer who was diagnosed with ALS, was in the media spotlight when he chose to end his life on January 17. The debate has been about the right of persons with terminal illnesses and severe limitations to end their lives. But what right do we have to help and life-sustaining treatment to live with terminal illnesses and severe limitations?

I am 78. For over 60 years I have lived with a respirator and nasal mask, used an electric wheelchair, and needed help from my personal assistants with most things. In 1961, at the age of 17, I wanted to kill myself when I contracted polio, became paralyzed, could not breathe, and was put into an Iron Lung, a type of ventilator where I lied in a large tube with only my head outside. I saw my life ahead of me as a hopeless and prolonged dying. I could only move a few fingers. How could I then kill myself? Collecting sleeping pills in my cheeks like a hamster didn't work. How lucky for me! I had no idea what possibilities life would offer me.

Björn Lindeblad fought for the right to a comfortable and safe death through the health care system. Surely, everyone should have this opportunity - after they have received all the help they need to live!

Before deciding not to start or not to continue life-sustaining treatment, the doctor in charge must, according to the Swedish National Board of Health and Welfare's Statutory Instrument 2011:7, Chapter 3, consult at least one other authorized professional and document in the patient's record, among other things, his or her attitude to life-sustaining treatment and that of the patient and his or her relatives. But is it equally reassuringly regulated when one wants to live and needs life-sustaining treatment?

On January 6, a woman with extensive disabilities and Covid was admitted to the South Hospital (Södersjukhuset) in Stockholm with severe breathing difficulties. The doctor in charge was unsure whether she would survive life-sustaining treatment and refused her oxygen or intubation despite the family's pleas. The woman died two days later.

Health care providers do not have to respect the wishes of patients and their families when they request life-sustaining treatment. At the beginning of the pandemic, hundreds if not thousands of older persons were summarily given palliative care without oxygen or intubations, without being asked, without even seeing a doctor! For older and disabled people, the risk of losing one's life in this way seems far greater than the risk of having to live longer than one would like.
Many people with severe disabilities fear for their lives if they end up in hospital with Covid. How does the doctor judge someone's quality of life? Who is completely free of preconceptions? How many doctors who don't know me would think my life is worth living? That's why I've written a letter of intent that my family and a few close friends will also sign. The text will be attached to my medical record in case I end up in hospital:

"If you don't know me closely and only see my body, my need for a ventilator around the clock and my extensive need for personal assistance, it is easy to conclude that my life offered no quality of life already before I became ill and will not offer it after any life-sustaining treatment. I feel that I have had and still have what I consider to be a full, rich, and exciting life with my wife and daughter, studies and work abroad as a researcher, project manager, founder of several organizations, leader in the disability movement also internationally, lecturer in many countries, with many trips, and long stays abroad. And it still goes on. I am currently writing a chapter for an international book entitled "Ageing of the Oppressed."

The 60 years with my disability have helped me understand what constitutes quality of life for me: relationships, mainly with my family and friends, meeting new people, feelings of happiness I can experience in nature, contemplating art and listening to chamber music, my work in disability policy, interest in literature and several scientific fields, my daily meditation practice and much more - small things that, together, bring me joy many times a day and make life interesting and worth living. Reaching this realization, becoming aware of my own preconceived notions about disability and ageing, has taken me many years, much thought, many psychotherapy sessions.

I love my life and want to keep living as long as I can. I therefore ask the responsible health care providers to discuss my position with my family and friends as well. If there is a chance to sustain my life with, for example, medication, surgical interventions, oxygen, intubation, tracheostomy, I want to take that chance."

All persons with extensive disabilities should write similar texts to clarify our own view of our quality of life, how we see it. With the current fixation on youth and health and the hardening social climate, it has become too easy for others to condemn our lives.

Dr Adolf Ratzka