Mary had been to the doctor for symptoms she was experiencing including jaundice, nausea, a pain in the upper abdomen, loss of appetite and weight loss amongst other symptoms. Tests showed she had advanced pancreatic cancer which has a low survival rate with a short window of life expectancy. She learned the news when the doctor, accompanied by a nurse and a social worker met with her at the hospital. The news was devastating. Six month was about average, sometimes a bit more, sometimes a bit less. There was nothing they could do, it was spreading through her body and they suggested palliative care to address the pain symptoms.
Listening to the news all she heard was that she was going to die soon, and there was nothing they could do to cure the problem. It was futile and would cause her more distress with no real change in outcome. All they could suggest is a way to mitigate some pain.
Mary felt alone even though she had a spouse and siblings, there were no children, just relatives and friends. What was she to do? Who could she turn to for help?
When she left the hospital to go home it dawned on her the number of things she would need to do. Wills, Power of Attorney, Healthcare Proxy, funerals, things she had planned to do that were not now going to happen. What would she experience over the coming months, pain, ability to move around, would she be bed ridden, would she lose her ability to communicate and think? Who would be able to look after her? Should she stay home or go to a nursing home and if so when? How would she talk about these things to those close to her? Even though Mary had a post graduate degree she had never considered end-of-life seriously. Few people do. How could she get answers to her questions? How do you round out your life in just a few months?
Beth had many health issues, mostly because she was very overweight. She was aware that her lifestyle choices had potentially imposed limits on her life expectancy. Being overweight her organs were overloaded and her health began to fail.
Beth and I had many deep discussions and we talked about what would happen when we were no longer in a position to make informed health decisions. She waved this off, saying that she would always be in a position to talk about her care to her doctors, and it was too soon for such a discussion.
When I last saw Beth, she was in a major hospital in Boston, with an intubation tube and in an induced coma. Beth had always said she never wanted invasive intubation because she would never recover from it. Her Health Care Proxy didn’t know this and Beth had not written down her end-of-life care wishes. Her Health Care Proxy wanted to do everything she could to save Beth and said "yes" to everything the doctors offered. Had she known what Beth wanted -- if Beth had written directions -- she would have followed them.
When I asked her about this and told her of Beth’s wishes she said she didn’t know anything about them. Beth was right, she did eventually die without regaining consciousness. Her prediction was correct, but her wishes were never followed because her Health Care Proxy didn’t know about them and there was no written record. This is why it is so important for everyone to have their wishes known and documented.
There comes a time in everyone’s life when the inevitable will happen – and they will pass away from life. But we don’t want to believe this and we hope that we can put it off. If we don’t talk about it and try to put off any discussion, we will be unprepared when it comes. If we are told that end-of-life is imminent, we are in shock and often don't know what to do.
That’s why I wrote this book – Dying Well Prepared: Conversations and Choices for Terminal Patients.
I worked for many years in hospice and palliative care, not as a licensed caregiver/nurse or social worker but in admissions and marketing. In this role, I engaged with patients and their families and and was privy to their experiences when confronted with end-of-life issues. I frequently hosted gatherings of patients and families in different nursing homes to work through some excellent material such as “The Conversation Project.” I saw people having difficulty coming to terms with the realty of death. As a lay person, I felt the distress acutely and never developed a professional distance from those whom I had met. I should add here that, in 2001, I lost my eldest son, so I have personally experienced the loss of parents and a child.
During this time, I was often asked for a publication people could read that covered the broad range of issues they faced. How to work through the medical-speak, how to plan caregiving as their disease progressed, how to make financial and legal plans, how to protect and articulate their legacy and what life had meant to them, and importantly how to talk to those around them about what was happening?
I had a lot of handouts -- materials that dealt with a particular topic, or from a particular point of view -- but no overall helpful guide. Something you could read from cover-to-cover, or just mine for specific information. Importantly, the information needed to be crisp and brief so that the ideas and concepts were easy to absorb. And it needed some suggested language to help people find the words they needed to discuss issues. I had been particularly fortunate during my hospice career to work with some excellent hospice physicians, nurses, chaplains, and social workers and see how they used key phrases to help people with the problem of finding words. It made so much sense that I include suggested language in this book.
While the book is aimed at the patient as the reader, it works well for family and friends also.
I still to this day work as an ombudsman as an advocate for residents in nursing homes..
I have changed the names of these people to protect their privacy. Their stories are compelling. There are many more. These are just a few of the people who are why I wrote this book.
I wrote “Dying Well Prepared: Conversations and Choices for Terminal Patients” to be a guide and a roadmap, to prompt many questions, and to provide some of the answers for every Mary, Beth, and Colin.
Colin was driving home from seeing an old college friend in hospital. Neither Colin nor his ‘old friend’ were really that old, but his friend had had a devastating stroke that had left him incapacitated. His friend couldn’t talk and couldn't comprehend what was happening. He made sounds but no one understood.
No one saw this coming, they had both been athletic and never suspected that one of them would become stricken. When he saw his friend, Colin wept openly. He didn’t know what to do. His friend had been alone and help came too late so any rehabilitation would take a long time and his friend would never be the same again. Colin wanted to help his friend, to understand what problems his friend would face, and how his friend could organize his life.
What were the alternatives for care?
Who could look after his friend and care for him, what legal and financial steps were needed, what happens if his friend does not survive this, how do you explain all these things to others? So many questions but no answers.
Colin also wanted to know what he should be doing to ensure his own wishes were carried out if he met with a similar disfortune. Whatever Colin could do for his friend, he wanted to ensure he put the necessary legal and financial instruments in place for himself. He wanted to be sure that if something happened to him then people would know what he wanted for care if he can no longer tell people.
Colin’s experience is all to frequent. Healthcare problems arise and we will all face our end-of-life sometime, usually not well prepared.
Working in hospice and as an ombudsman in nursing homes, I spoke with a lot of Colins. They all wanted to know more, realized they were ill-equipped because they had never really thought about such things and were looking for help.