The talk – getting the conversation started about advance directives

I had the privilege to work as a palliative care nurse practitioner in a large hospital with nine different intensive care units. One morning an order for palliative care was received from a trauma surgeon for a 67-year-old female patient with a traumatic brain injury and very poor prognosis.

As a palliative care nurse practitioner it was my job to go to the ICU, review the patients chart, speak with the trauma surgeon, nursing and case manager, examine the patient for any symptom management needs, and contact the family to set up a meeting. In the family meeting we would discuss the patients condition, treatment options, advance directives, and patients prognosis. This particular case included the patient, her husband, four children, and eight grandchildren. The patient was a retired nurse, working as a volunteer for the Red Cross on a mobile unit for a blood drive in the community. She was exiting a bus mobile unit, and somehow lost her balance. She fell down the stairs of the bus and out the door head first onto the concrete curb, sustaining a major head injury. She was rushed to our hospital, where a MRI indicated a massive brain bleed, she was taken into surgery where the bleed was stopped, and the patient was put on a ventilator and sent to the neurotrauma intensive care unit. My order was to see the patient on day four post-surgery.

The trauma surgeon had determined the patients prognosis was poor. The patient was not responding to painful stimulation without sedation, which indicated her brain activity was minimal. She was unable to breathe without the ventilator. Most of the adult family members were present during the family meeting. The husband insisted the patient, if she could speak for herself, should decide whether she wanted to continue with full aggressive care. Several of the children spoke individually after the family meeting and disagreed with their father. They stated their mother had worked as a nurse, she saw firsthand what treatments patients go through, and she did not want the end of her life to resemble the scene before us. Daily I met with the husband and available family members to answer questions, provide emotional support, and educate them on the current treatment as well as less aggressive treatment options.

On day 10, the patients condition had not improved. She remained on the ventilator, with a nasal gastric feeding tube providing nutrition. No longer on sedation because of her lack of response, she was placed on an oscillator, which shook her bed to avoid fluid buildup in her lungs or pneumonia. The patients husband came to me with tears in his eyes and a folded piece of paper in his hand requesting me to read the paper.

Hand typed in letter form composed by the patient, the paper indicated her wishes if she were ever to become ill or encounter an accident, which compromised her independence in any way. She did not want heroic means to be taken to keep her alive. No cardio pulmonary resuscitation, ventilators, or feeding tubes. She wanted to be allowed a natural death and did not want to be a burden to her husband or children. She hoped they would always remember her alive and vital. The husband had been carrying this very important document in his left breast pocket, over his heart since post-surgery day one.

Have you ever thought about your or a loved ones wishes for end of life care and just how to get this conversation started? If you are of an advanced age, or have a family member of advanced age, the talk about end of life care or advance directives is an important and essential conversation to begin. No simple guide or single conversation can cover all the decisions you or your family may face. What a conversation can provide is a shared understanding of what matters most to you and your loved ones. This shared understanding can make it easier to make decisions when that time comes.

Some questions to think about could be, are there circumstances you would consider worse than death? How do you feel about the long term need to be on a ventilator? Would you want to be on a feeding tube long term? How would the answers to these questions change if you couldnt communicate or even recognize your loved ones? What kinds of aggressive treatment would you want if for instance your heart stops? When would it be okay to shift from a curative care focus to one of comfort care alone? What would a good death versus a hard death look like to you? If you were unable to make treatment decisions for yourself, who would you choose to make them for you?

These are really tough questions to answer for most people. Many have never considered the possible treatment options. This is why it is important for you to speak to your healthcare provider and ask about aggressive treatment such as cardio pulmonary resuscitation and what the outcome might look like for you given your health status. Think about having the talk soon with family or a healthcare provider. Like the story above, we never really know when we will need our voice to be heard.

Questions and or comments regarding this weeks health column please contact Anne Weinberger, ANP at the Bitterroot Physicians Clinic, a Marcus Daly Memorial Hospital owned clinic, 1200 Westwood Drive, Hamilton, MT 59840. Working together to build a healthier community!

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The talk – getting the conversation started about advance directives