An 89-year-old frail woman presents with Alzheimer dementia, hypothyroidism, depression, congestive heart failure, and macular degeneration. Her functional status was gradually declining. It was difficult for her family to provide 24-hour care and she was admitted to a nursing facility. Her dementia worsened over a period of 2 years in the nursing facility and she became incontinent of urine and feces while developing limitations in speech and ambulation. She could not sit up without assistance and lost her ability to smile and hold her head up independently. The facility was very supportive and a hospice consult was initiated. Figure 5-1 shows Dr. Gokula along with the hospice nurse visiting the patient for admission to hospice care.
Family physician Dr. Murthy Gokula and hospice nurse Chris Emch are comforting and examining a terminally ill patient nearing the end-of-life in Heartland Hospice.
End-of-life care is care that is delivered to patients of all ages who have a very short life expectancy. This care is focused on meeting the patient's emotional and physical needs for symptom relief and general comfort care, and offering patient and family support.
The five basic principles of palliative care are:1
- Respect the goals, preferences, and choices of the person.
- Look after the medical, emotional, social, and spiritual needs.
- Support the needs of family members.
- Help patients and their families access needed healthcare providers and appropriate care settings.
- Provide excellence in care at the end of life (see Figure 5-1).
The quality-of-care domains for a person at the end of life are:2
- Physical and emotional symptom management.
- Support of function, autonomy, personal dignity, and self-respect.
- Advanced care planning.
- Aggressive symptom control near death.
- Patient and family satisfaction.
- Patient's assessment of overall quality of life and well-being.
- Family burden—emotional and financial.
- Survival time.
- Provider continuity and skill.
- Bereavement services.
- Approximately 25,000 children per year in the United States are born with or develop a serious or life-threatening disease such as cancer, cystic fibrosis, cerebral palsy, or muscular dystrophy.3
- According to National Health Center statistics, there were approximately 2.46 million deaths in the United States in 2010; most were attributed to cardiovascular disease and cancer.4