Optimal Care at the End of Life
Mrs. Black, a 68-year-old realtor, found she had metastatic ovarian carcinoma a few months ago and is now fatigued and losing weight. After several unsuccessful treatment regimens, she has accepted hospice services, and friends and hospice staff ensure that she can stay home to the end of her life. The hospice clinicians manage pain and other symptoms aggressively, and she is able to direct the completion of her life to her own satisfaction.
Population (in United States)
Priority Concerns for This Population
Comfort, dignity, life closure, caregiver support, planning ahead
Major Components of Health Care
At-home services, hospice, and personal care services
Goals for Health Care
Coping with illness at the end of life
Basic cost for health care services, treatments and support services are covered fully. In addition where appropriate lifestyle related interventions, screening and prevention activity are also covered. The cost of acute hospitalization, nursing facility care, long term care, where medically indicated is covered.
The coverage is universal and not dependent on the condition, stage of life or ability to pay. Supplemental insurance may be purchased. Plans may compete of riders for additional services. Employers may also provide additional services. Coverage for education of caregivers will be provided.
Preferably the person who is chronically ill will have a primary care doctor or if indicated a specialist who will coordinate their care. Specialists will be available for consultation in person or through other means to address specific problems. The person will have choice of providers including doctors, hospital, nursing facility, local pharmacy, or certified health club. Emergency Medical Services that can provide immediate care and transfer to appropriate level of care. Home evaluation and treatment available promptly; 24/7 rapid response to home for crises Equal access to health care services tailored to situation. Administrative needs are minimal.
Quality Health Care:
Patient Centered (No Helplessness or Unjustified Routines): Care is patient centric and is provided with dignity, cultural sensitivity and respect for the person. Information is provided in age and education level appropriate manner. Advance care planning consistent with patient’s wishes; resolution of family issues; support of family caregivers.Informed and shared decisions reflecting parents’ values (constrained by legal limits). Lifestyle reflecting informed decisions; self-monitored care; patient and family education.
Safe (No Harm): Care that is provided will be safe from errors. This will be of particular challenge when there are changes in the venue of care. For example the person is in need of hospitalization and the medications they take are not given as ordered.
Effective (No Needless Failures): Specific outcomes will be measures and adjustment in the services made. Recommendations from national agencies and groups will be followed. Care that is effective for the problems experienced by the person suffering with a chronic condition. Evidence-based secondary and primary prevention and rehabilitation.Government and professional association guidelines are readily available and are transparent. Home-based care; nutritional support; reliable facility care when needed; support for caregivers; appropriate preventive services.
Efficient (No Waste): For brief acute episodes, diagnosis is made and care provided in timely efficient manner. A treatment plan is formulated according to an informed dialogue with the person or their legal representatives. Government and professional association guidelines are readily available and are transparent. Regulatory agencies oversee quality of services, and advertisement to consumers.
Timely (No Needless Delays): Evaluation and treatment for brief acute episode is available promptly. Convenient and responsive scheduling, no waiting for health care services; immediate access to results of tests; immediate access to clinical guidance and other information; timely education and support; Little waiting for health care services; adequate notice of expected events; convenient and responsive scheduling; immediate access to test results, clinical guidance, and other information; short time to diagnosis and treatment for positive screens and worsening conditions.
Equitable (No Unjustified Variation): Care is provided universally with no bias due to personal characteristics. equal opportunity for important treatments; no bias due to personal characteristics. Regulatory agencies oversee quality of services, and advertisement to consumers.
Coordination of Care:
Care is patient centric and revolves around the patient and their doctor (clinician). Care continuum management across multiple providers. Public health services that have provisions for early identification of community trends. Education regarding risk factors and practical ways to avoid them. For identified problem and secondary prevention, care is coordinated regionally, through medical records, supported by privacy provisions. Care in its various levels is coordinated to achieve best outcomes and limit errors and cost. For identified problem and secondary prevention, care is coordinated regionally, through medical records, supported by privacy provisions. Public health provisions for early identification of community trends.
The goal of innovation is to improve quality of the person thorough achieving and maintaining optimal function. Personalized medicine, identified early susceptibility based on genetics, technological tools to assure compliance with treatments and ability to monitor response to interventions. Utilization of personal medical records that can automatically provide reminders of needed screening, immunizations and monitoring response. A personal record of treatments for acute episodes including medications and side effects that is paper or electronic based. It would include new treatments, diagnostic procedures, new services, new monitoring tools new delivery systems and concepts. Updates on research and innovation quickly reaching the point of care and the person who will benefit from it.
· Monitoring devices for falls, pressure, etc.;
· Computerized physician order entry with decision support
· Pain management that is patient specific
· Electronically available health care plans
· Advance care plans available
· Electronically 24/7 access
· Secure message capability
· Available in language and level of education of choice
· Real-time home monitoring devices; e-reminders for screens and monitoring
· Longitudinal electronic health records and personal health records
In 2014 the World Health Organization called for palliative care to be integrated as an essential element of the health care continuum. Yet in 2017 US palliative care services are found largely in hospitals, and hospice care, which is delivered primarily in the home, is limited to people who are dying soon. The majority of Americans with a serious illness are not dying; are living at home, in assisted living facilities, or in nursing homes; and have limited access to palliative care. Most health care providers lack knowledge about and skills in pain and symptom management, communication, and care coordination, and both the public and health professionals are only vaguely aware of the benefits of palliative care and how and when to access it. The lack of policy supports for palliative care contributes to preventable suffering and low-value care. In this article we outline the need for a national palliative care strategy to ensure reliable access to high-quality palliative care for Americans with serious medical illnesses. We review approaches employed by other countries, list the participants needed to develop and implement an actionable strategy, and identify analogous US national health initiatives to inform a process for implementing the strategy.
The law states that it is the responsibility of the “attending health care practitioner” to provide the necessary information and counseling. In my mother’s case, I do not know which of the countless doctors who checked in throughout her hospital stay met that description. Clearly that aspect of the law has to be clarified to produce the desired effect. Perhaps what’s needed is the equivalent of a Miranda warning for patients facing terminal illness: You are not required to accept treatment, and if you opt to decline it, a palliative care doctor will be provided for you who will ensure that your pain is fully and effectively managed. But such a requirement would be just the start.