INTRODUCING PALLIATIVE CARE & HOSPICE TO PATIENTS & FAMILIES
Patients with life-limiting, advanced illnesses need excellent symptom management, psychosocial and spiritual support, and guidance with decision making. Palliative care is a rapidly growing field that is meeting these needs in inpatient and outpatient settings. In addition, many providers of both general and specialty care embrace the philosophy of palliative care and incorporate its core principles into their practice. Whereas palliative care might be appropriate for patients of all stages of a life-limiting illness, hospice care is appropriate for patients in the terminal stage of their illnesses. Interdisciplinary team work is a core principle of palliative care and hospice, building on the expertise of clinicians, nurses, mental health providers, chaplains, social workers, and other care providers.
Patients with a serious illness are vulnerable and may have negative perceptions about palliative care and hospice care. Appropriate times to introduce palliative care are (1) at the time of diagnosis of a life-limiting illness; (2) at the time of an adverse change in clinical status (eg, disease progression, loss of function, or increased symptom burden); (3) at the time of a crisis (eg, hospitalization, intensive care unit admission, or consideration of advanced therapies such as left ventricular assist device, organ transplantation, renal replacement therapy, or artificial nutrition); or (4) when asked by patients or family members. Patients might confuse palliative care with end-of-life care. When they respond with anxiety or hesitancy to the idea of receiving palliative care, it is essential to ask what patients know and what they want to know and to explore their emotions. Clinicians can further ameliorate patients’ concerns by explaining that palliative care is not intended to replace their current treatment plan but rather to augment it by being provided alongside disease-directed, life-prolonging therapies. Optimal symptom control can help patients to continue demanding therapies and achieve other goals patients might have.
A later transition in care that might elicit intense emotional responses is the transition to hospice care. Common concerns such as “giving up,” feeling abandoned, or feeling “not ready to die” need to be carefully explored. The understanding that the adverse effects of further disease-directed therapies might outweigh their potential benefits often requires a cognitive and emotional process for which patients are not given enough time. A kind and patient approach can help these conversations to progress successfully.
Hospice provides medications necessary to address symptoms, care equipment, nursing, chaplaincy, and social work visits, as well as some home health aide visits. After a patient’s death, bereavement services are provided. Most patients receive hospice care at home, and family members need to understand that they will be providing the bulk of day-to-day care. If severe symptoms cannot be controlled in the home setting, patients can be admitted to an inpatient hospice facility. Hospice care can also be provided in a nursing facility; however, most patients, depending on their insurance, would be financially ...