Brianne Madsen, Bachelor of Science University of Nevada, Reno School of Medicine Physician Assistant Studies Program Master of Physician Assistant Studies Mrs. Julie Thomas, MS PA-C PA 642: PA Role Development II A PA’s Role to Care for the Patient and the Caregiver Family members caring for loved ones who have a serious illness are often overlooked during care of the person who is ill. The caregivers may receive only fragmented health services for themselves although they are recognized by medical professionals as crucial contributors to patient welfare. A propensity for depression exists for caregivers of patients with advance cancer and these symptoms tend to qualify as clinically significant1. By the nature of their role, caregivers are content to stay in the shadow of their loved ones, focused on the needs of the seriously ill patients.
These individuals often feel alone and isolated and move quietly with the patient through the death process, providing comfort to their loved one as they go. The caregiver’s burden can be overwhelming on the individual, as expressed in the story of Robert and Betty, my own family members; hence, a family medicine PA’s intervention is required to reduce the burden of care and promote the wellbeing of the entire family during this difficult time. Betty Nelson was a devoted mother and wife. She dedicated her life to raising her two kids and supporting her husband through a variety of jobs running hotels. When the kids were in elementary school, Betty mostly stayed at home with the kids while her husband Robert, who traveled a lot for work, earned a living for the family. The two kids grew, graduated from high school and moved out of the family home.
Robert and Betty enjoyed fishing and grilling out on the porch in their empty nest. Robert began to have TIAs in 2007 and was worked up in the hospital. It was discovered that Robert had stage IV adenocarcinoma of the esophagus with metastatic disease to the liver. He had several co-morbidities and he deteriorated over two years to the point where he needed 24-hour care. Betty was Robert’s sole caregiver throughout his illness. She struggled with this position, she lamented over her changing relationship with her husband, especially over Robert’s speedy decline and loss of function. She became lonely and depressed and the stress of caring for Robert was staggering. Managing Robert’s plethora of medications was especially challenging for Betty, though food preparation, toileting, and hygiene also taxed her.
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She had difficulty figuring out the medical equipment and hospital bed that Robert now needed. Their house turned into a medical facility, it seemed to Betty. Robert controlled the finances during their marriage so now Betty found herself responsible for the never-ending medical bills that were piling up. Robert was a large man about five feet nine inches tall and weighing 350lbs and Betty, while overweight herself, was not a smidge over five feet tall. Helping Robert move around the house was extremely difficult and wore on Betty’s small frame; she says her back is still sore to this day. Betty felt isolated and it seemed to her she had no one to turn to. Both kids now lived in other states and could not come home regularly to help with Robert’s care. Robert’s cognition changed, and he lashed out at her in anger, which felt even more isolating. Betty turned to alcohol and food to cope with her stressful new world. Robert’s condition was deemed terminal and he started hospice care in the summer of 2009.
He passed away at home Sept 20, 2009, in the upstairs of their family home. A year later, Betty still reeling from the loss, finally sought medical care for herself. She was diagnosed with depression, breast cancer, diabetes, hypercholesterolemia, and a hiatal hernia. Betty had not sought medical care for herself since Robert fell ill. Betty was encouraged by her kids to consider herself during Robert’s illness, but she was too physically and emotionally fatigued to do anything more after Robert was cared for, even after Robert was gone. The effects of a poor diet, sleep and excessive alcohol intake exacerbated her fatigue and her anxiety. This is just one story of a caregiver As family medicine PAs, we don’t just care for the ill, we care for the entire family. The importance of supporting the entire family through a loved one’s illness is so important, such that the impact on the family is minimized, specifically so that the health of the caregiver is not overlooked or jeopardized.
Ybema, Kuijer, Hagedoorn, and Buunk2 explain the perceptions of inequity and the out-of-balance exchange of instrumental help and emotional support experienced by the family when one of them is faced with a severe illness. The authors find that caregiving partners feel strained and deprived as they invest excessively on the ill partner, and some caregivers even feel guilty when they are unable to support the patient satisfactorily. Betty is an example of this; she felt extreme guilt after Robert passed. She believed she did not provide the best care and this spiraling thought process led her into a depression after Robert died. The help of a concerned ‘outsider’ is required to remove the perceptions of inequity from the surviving family member and to assure the caregiver that he or she is doing enough to help the severely ill family member1. Therefore, a PAs should take the time to observe not only the patient but also satisfy caregivers’ need for encouragement, comfort, love, a helping hand, and appreciation during such difficult time. Referrals can be key to assisting caregivers Other family members speak of feeling overlooked, demeaned, and ignored or excluded in their caregiving role1.
Understandably, working with a terminally ill patient becomes increasingly difficult as the illness progresses, a situation that wears down caregivers. Burnout, depression, and constant exhaustion arise unintentionally, all of which hinder the provision of adequate care. The burden of caregiving is lessened when the caregiver has someone to turn to as the situation becomes tougher than it was. Family medicine PAs should be available to listen to the needs of both the patient and the caregiver, and to ensure that things are done as preferred by the patient without straining the caregiver and other family members. The PA’s role is crucial in availing medical resources needed by the patient and providing physical assistance such as moving the patient to reduce the strain on caregivers1. Where possible, the PA can organize for additional financial support to reduce the financial strain on the surviving family members. In our story, Patti’s health situation worsened because she practically had no one to turn to – a situation that could be avoided with the help of a family medicine PA.
The partnership interventions between PAs, caregivers, and family members improve the quality of a caregiving experience for individual family members and improve PA’s attitudes towards families. In spite of the strength and courage, caregivers desperately need comfort, appreciation, and a helping hand during such difficult times, and family medicine PAs are positioned perfectly to provide these needs1. The PA sits side by side with family members to make the waning illness days as pleasant as possible. As a result, the PA reduces the burnout, depression, financial strain, isolation, and loneliness felt by the entire family, as they struggle with the caregiving experience.
