Did you know less than 10% of people die suddenly? Most people - more than 90% - will experience a protracted life threatening illness. This could mean a predictable steady course with a relatively short terminal phase (Cancer) or a slow decline punctuated by periods of crises (Congestive heart failure, emphysema, Alzheimer-type dementia).
In my experience, people plan for their funeral but forget to plan for their decline. Therefore, a large percentage of people die without ever communicating what’s important to them.
I’ll share the story of one of the 90% and then discuss how communication, or lack thereof, will shape his experience: John was a 78 year old African American male, retired from both the Army and US Postal service. He was forced to take an early retirement from the Post Office due to the effects of chronic illness. He was diagnosed with Congestive Heart Failure, Diabetes and Kidney Disease.
His illnesses took their toll in the last few years of his life. Congestive Heart Failure caused fluid retention forcing tight restrictions on his daily fluid intake. Diabetes caused insulin dependence, and closer to death multiple toe amputations with difficulty healing. He needed to use a walker to get around, and assistance with bathing, shaving, taking his medications and other activities of daily living. Toward the end, John needed to use special eating utensils due to diabetic neuropathy.
John’s wife was his caretaker; she drove him to medical appointments and consulted with doctors about his care options. He did not communicate much about his preferences and priorities around his medical care but often said he was “tired”. He allowed his wife to make all of his medical decisions.
Why Communication Matters:
- It reveals what the patient doesn’t understand, so that medical information can be better explained and decisions are made in alignment with what the patient wants – and does not want.
- It creates a working knowledge of possible scenarios, so that the patient understands what’s happening and their options for treatment, including outcomes, side effects and the impact on quality of life.
- It fosters prioritization, so that the patient becomes an informed participant in his or her own care, choosing treatment options based on what’s important him or her. The doctor-patient relationship becomes collaborative.
Consider the End-of-Life Experience of John:
John is facing a 6-month decline. Death is inevitable. But what we can do is help him die well through communication. Consider two likely scenarios:
- John was hospitalized 6 times in 6 months.
- He spends Thanksgiving in rehab and Christmas in the Emergency Room.
- The last two months of his life are spent in a skilled nursing facility.
- John dies in April, alone after a painful decline in the hospital, which included futile and painful life-sustaining care attempts: Intubation, feeding tube, and dialysis, penal and anal catheterization. Staff uses restraints, hospital bed alarms and mitts to discourage him from pulling tubes out. He is in obvious pain, is unable to tolerate the artificial nutrition and is swelling in all areas due to kidney failure. His wife is unable to decide whether Hospice is appropriate. His family is questioning whether they have made the right decisions.
- Counselor begins speaking with John’s wife; they have seven conversations. During these conversations, Johns wife is able to develop the confidence to start speaking with her husband about his priorities and trade offs.
- John tells her he wants to be at home; he tells her he does not want artificial supports or life prolonging measures if there is no chance he will regain quality. He tells her he has no quality when he is unable to be at home.
- As a result of these conversations, John is hospitalized once for Palliative measures and spends Thanksgiving and Christmas at home alongside his family.
- He dies peacefully in March, although one month earlier, he is surrounded by the people he loves.
You can see why communication is paramount.
Take a look at the many differences in the way John dies, and in how his family is affected:
- The family is in the hospital waiting area, making decisions and second-guessing.
- John spent six months in and out of the hospital, missing out on family connections and the opportunity to say goodbye.
- The family comes together to celebrate John, when he passes they are comforted knowing that he died the way he wanted.
- John spent his last six months at home with his family talking about their memories and saying farewell.