Basic Approach to Infection Control and Epidemiology

This chapter offers theoretically and experientially based approaches to help oncology clinicians in their interactions with family caregivers of adult patients approaching their end-of-life (EOL). It presents a theoretical framework for use by clinicians to interpret and gain understanding of interactions with family caregivers of the dying adult oncology patient. It is vitally important for healthcare providers to broaden their understanding of the patient with cancer to the context in which the person lives as a parent, grandparent, spouse/partner, friend, employee, and community member. The chapter presents several compelling reasons to assess and support care partners or family caregivers. Family caregivers of adults can experience greater distress and anxiety than the patient over 40% of care partners and family caregivers report at least 10 unmet needs including gaps in illness management information and lack of emotional support.

This chapter provides an overview of the experience of caregivers, and interventions that can be implemented at various points throughout the trajectory of the illness. Caregivers are often called upon to understand complex medication regimens, contact 'hard to reach' medical providers, navigate a difficult health and legal system, advocate for services, negotiate with insurance companies, and/or manage the household, finances, and children. The needs of caregivers are often overlooked by healthcare providers, friends, and family members in the face of the complex needs of the person with cancer. A growing number of psychosocial interventions have been developed specifically to address the psychosocial burden on caregivers. However, as each caregiver and care situation is unique, interventions need to be tailored depending on the patient's medical condition, emotional and physical needs, and required medical/nursing tasks.

Performing a palliative care interview involves listening to the patient's life story and learning about what is important to the patient. This includes addressing the physical, psychosocial, and spiritual dimensions of the patient and his or her family, each of which affects the quality of life. Similar to the clinical interview with the adult living with a serious illness, identifying what matters most to the child and parent is critical. Domains to be assessed during a clinical interview are: quality of life; coping and adaptation; and communication. Ideally, initiation of conversations about serious illness occur before the terminal nature of a child's illness is known definitively. Some parents may want to protect their children from difficult conversations. This chapter explains why are clinical palliative care interviews so difficult for healthcare providers.

This chapter depicts the intergenerational nature of palliative care work with the goal of care phrased in developmentally informed steps. Healthcare providers foster dignity when adapting universal palliative care principles to a local community in a participatory and culturally, spiritually, and developmentally informed way. Eliciting goals of care and documenting quality of life goals in the patient's medical record represents a primary palliative care competency as a universal skill relevant for all healthcare providers. Palliative care brings humanistic principles that transcend into all cultures and settings. The basic principles of palliative care include: an attentiveness to family function; a stance of loving kindness and positive regard for the patient; a listening presence that prioritizes patient voice/patient perspective; a maximization of symptom management; a commitment to quality of life; a coordination of communication; a desire to alleviate suffering; and a recognition of the dignity and worth of each patient.

Chronic pain syndromes are composed of a multifactorial relationship between biologically based neurological triggers and pathways; psychologically mediated moods, emotions, and behaviors; and socially developed responses, interactions, and consequences. The complex interplay between these factors can devastate a patient’s quality of life, as well as make the diagnoses, treatment, and ongoing management of chronic pain syndromes by health care professionals exceedingly difficult, resulting in psychological and physical disability. In chronic pain, the imprinted signals and perceived pain may persist for several weeks, months, or even years after the original injury has healed. Treatment of chronic pain creates yet another dimension of complexity, as it requires a multimech-anistic, multimodal, or multidisciplinary approach for effective management. Chronic pain often is mixed nociceptive and neuropathic or primarily neuropathic and is associated with imprinted neuroanatomical and chemical changes in the peripheral and central nervous systems, which results in abnormal processing.

Chronic renal failure poses a singular challenge for health professionals who deal with illness-related disability and rehabilitation. The course of progressive chronic kidney disease (CKD) leading to renal failure often spans many years; during the period before dialysis or renal transplantation is undertaken, the patient may experience disabilities related to cardiovascular disease, anemia, malnutrition, metabolic bone disease, neuropathy, muscle wasting, and acid-base and electrolyte disturbances. Dialysis treatment and transplantation significantly prolong the lives of patients with renal failure. A better understanding of the pathophysiological basis for many of the disabling aspects of chronic renal failure has led to therapies that may reduce the frequency and/or severity of these aspects of the disease. Prevention of disability and rehabilitation has become increasingly important as the number of patients treated with dialysis therapy and renal transplantation has become more common.