1. de Necker, Clara BCur

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At some stage, we all have one or two life-altering experiences, experiences that shift paradigms and experiences that leave you forever changed. Little did I expect to have such an experience during a routine appointment with the Forrer family. Everything about Mrs. Forrer's case broke rules, from diagnosis of her brain stem stroke to the day her beloved husband passed away.


Mrs. Forrer was living a fully independent life with her husband in a retirement village. She suffered from macular degeneration and was almost totally blind. She had a history of arteriosclerosis that required previous hospitalizations. She experienced a good life with her happy family and enjoyed close relations to her four children, grandchildren, and great grandchildren.


At the age of 81 years, Mrs. Forrer was admitted to the general intensive care unit (ICU) with a small brain stem stroke. Her ability to swallow was severely affected, and she presented with respiratory insufficiency; however, she had full cognitive function. Unfortunately, reintubation and case management referral were necessitated by progressive respiratory deterioration. When I looked at the diagnosis in my assessment of her case, I expected the worst. To my surprise, the hospital case manager confirmed that Mrs. Forrer easily mobilized to the chair and had no problem communicating her likes and dislikes to those around her.


I met with her treating doctor to discuss her condition. The possibility of home ventilation was considered because weaning efforts had failed and it was not clear if it would be successful or even possible. With the excellent care from the ICU staff, ventilator-associated pneumonia was prevented. There were no other complications during her ICU stay.


I remember my first encounter with Mr. Forrer. He was adamant that his wife would not go anywhere with a ventilator. From an infection and quality-of-life perspective, going home was the better option, but there was no way to force such a decision onto the family. Informed consent played a crucial role in the success of her story. We spoke about how care would be coordinated, predischarge visits, and planning, not only by Sleepnet (which provided the life support equipment) but also with the home nursing agency. We also addressed home staff training and the eventual education of a family caregiver. The benefits of going home versus the risk of an extended ICU stay were weighed, including driving back and forth to the hospital for twice-a-day visits. Another point touched on was the importance of natural sunlight in avoiding a variety of additional health problems.


During the negotiation phase, it was emphasized that the transition process would not continue without their involvement and consent. Mr. Forrer started off as the mediator between his wife and I, explaining the pros and cons of transitioning back to home. Within the matter of a week, progress could not come fast enough. The idea of going home became their joy. Mrs. Forrer personally approved and consented to the transition plan.


To accomplish such a complex organization of service was not without its problems. On the first night of the transition home, the staff member who was trained in the ICU did not arrive for duty. As a result of intensive problem solving, readmission was avoided. The Forrer family played an essential role in the success of this case due to their open-mindedness and ability to resolve problems.


Rehabilitation started with a physiotherapist visiting daily. Gradually, Mrs. Forrer was fully weaned off ventilation. She received speech therapy to assist with difficulty swallowing. This had already improved during the time she was hospitalized. Eventually, she regained her ability to swallow; however, her husband sometimes gave her health care team heart attacks with his choices of food for her while her tracheostomy was still in place!


The nursing routine was settled and emergency procedures were in place. There were regular multidisciplinary team meetings to review Mrs. Forrer's care plan. During this time, we started training a caregiver who had been designated by the family. This is where another paradigm shift made its appearance. Anna was a young lady who worked on the farm for Mrs. Forrer's daughter. She was easily trained to provide safe and effective care, including but not limited to tracheostomy care, changing ventilator filters and circuits, and administering percutaneous endoscopic gastrostomy tube feedings. Not long after Anna started, the nursing care was gradually withdrawn and family privacy returned to normal. Mr. Forrer cared for his wife at night and Anna during the day until she was fully weaned and the tracheotomy removed. Although there were readmissions and emergency events, all were successfully managed.


A most important ethical issue in Mrs. Forrer's case was that although home ventilation had been done in South Africa, it was seen as an absolute last resort after months of ICU ventilation and was available for a limited patient population. It was an intervention reserved for individuals diagnosed with neuromuscular related disease and was seen as a palliative measure. To our knowledge, planned early discharge for a condition where rehabilitation was a possibility had not been undertaken. In addition, the transition was directly home due to the lack of a rehabilitation facility. This posed additional challenges with regard to therapy and care coordination, as well as having the support of a supervising physician. How does one establish a care modality with new boundaries? How are new data created for evidence-based care? I considered the ethical principles in the decision making: beneficence, nonmaleficence, justice, and autonomy. What convinced me of the path to take was the patient's choice. I felt confident that the plan, while groundbreaking and met with some skepticism, met ethical principles.


Mrs. Forrer also weighed the risks. It was her desire to go home where she could hear the birds and feel the wind through her window. She chose the human experience despite its risks over the perceived safety of a controlled inpatient environment. That safety is relative and affected by several variances (e.g., human errors, superbugs, unnatural sleeping patterns, high noise levels, unnatural light). When does the acute condition transition into a chronic condition that can be treated safely in a more appropriate setting than in a hospital? Why should we not be responsible for transitioning care earlier in the episode of care in light of what is best for our patient's unique medical needs? While decision making rests with the treating physician who ultimately is responsible for his/her patient, can we influence the plan of care by providing new evidence created by those who were first to be willing to try something new within sound ethical and safe clinical boundaries? I believe so.


I was privileged to be invited to the celebration of Mr. and Mrs. Forrer's 65th wedding anniversary, which was held well over a year after her successful weaning. Their reason for inviting me? They believed that without the courage to persist in trying a new idea they may not have had this special celebration, an event that was attended by four generations of the family.


I'll never forget Mrs. Forrer's words to me at a stage we all feared that things had turned for the worst and that she had entered the final stages of life. Where to now? Questioning if home is the best place for her to be with her complex care needs, her response: "I've had my life, there is nothing keeping me here. I don't want to die in a cold hospital room. I want to be with my family, I want to go to the family farm." And that was the place where, against the odds, she recovered-in the middle of the Karoo, hundreds of kilometers away from medical services or critical care facilities.


Quality living is how we feel about where we are, even with a disease requiring advanced care such as invasive ventilation. Quality care is the attitude of those who make it possible even if it requires exploring the road less travelled for sake of their patients, taking the risk with them to make end-of-life expectations possible. The case manager is ideally positioned to ensure patients, who are individuals, have quality living while still receiving quality care. We have the "magic wand" to create a win-win situation for those who most need it, and this wand is our courageous hearts.