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The Narrative of Life

Gloria gripped the steering wheel. Adam was leaning back in the passenger seat. The car engine was running. It was a cold night in November. Flakes of snow were clumping together on the wet slushy ground – a reminder of a long winter to come. They were waiting for the car to defrost, the thin film of ice on the windshield to melt, the mist of their breath inside to dissolve. The picture in front of them became clear: a large building made of glass and cement with red neon signs that read ‘Emergency Room’ and ‘Entrance’. The scattered, square, gently lit windows of the building seemed as if they were frames to pictures of patients and doctors — and their stories of struggles, and hopes.

Tears were running down Gloria’s cheeks. She noticed she was crying only when she tasted the salty drops of despair covering her lips. She looked at Adam. To her, he looked the same: the young man she fell in love with, the father of their children, an inventor with an ingenious mind, a gentle man, a gentlemen, the love of her life. To her, it looked as if time has stopped. Or rather, she wanted time to rewind. Gloria wanted to become oblivious to the years that have passed, to the diagnoses that were made, one after another, as Adam became sicker: his uncontrolled diabetes, his curved back, his blindness, his failing legs, the wounds that refused to heal, the countless operations, the hope, and despair, and hopes again. And then the final words, calm but informative, scientifically carved with a cold sharp scalpel, whispered as a declaration of defeat, along an empty, overly bright hospital corridor, coming from a doctor who was trying, at all cost, to avoid eye contact: “we tried everything,” he said, “I am sorry, but there is nothing else we can do, there is no cure.”

What alternatives do patients and their families have when their options for cure dwindle? When their illness is advanced, or terminal?

One solution for terminally ill patients is a hospice. A hospice is not any particular place; it is a concept, a philosophy of care. Hospice care focuses on relief from pain and other symptoms, and on quality of life, rather than on extending life.

This does not mean that patients choosing hospice care will have a life span shorter than those who choose more aggressive medical care aimed at extending their life. For example, an article in the New England Journal of Medicine (published in August 2010) concluded that patients with metastatic lung cancer who received palliative care had significant improvement in their quality of life and mood, and lived longer than similar patients who had standard care.

Hospice care typically offers 24 hour access to professional care that includes physicians, nurses, social workers, spiritual counselors and volunteers. Hospice care addresses not only the medical needs of patients but also their financial, psychological, social and spiritual needs, helping patients and their relatives to cope with illness, death, and bereavement.

Hospice care is typically offered to patients with cancer, severe heart disease, debilitating dementia or other terminal conditions with life expectancy of less than 6 month.

In the USA, hospice care is mostly delivered at home, but it can also be provided in a hospital, inpatient hospice, nursing or assisted living facility. Hospice services are covered by Medicare, Medicaid, and most private insurance plans – 1.56 million individuals in the US received hospice care in 2009.

Gloria and Adam chose hospice care. Adam was attended to by a doctor, nurses, and social workers. He was alert, his symptoms were well controlled. He actively participated in the decisions regarding his care. He understood that these are his final days and so did his wife and children. He died several days later in his home, surrounded by his loving family.

Most of us have no control over how long we live. Having some control over the environment in which a patient dies, and the care he receives in his last days will, in many cases, determine the narrative of his life, how he will be remembered, and how his family will cope with his death.

Dr. Shahar Madjar is a urologist working at Aspirus Keweenaw Hospital. He sees patients in Laurium, Houghton and L’Anse. Contact him at smadjar@yahoo.com.

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