At first glance, this new approach to change and improvement may seem daunting-- - or it may appear to be too far from the kinds of change institutions usually practice. But because care of the dying is known to be so poor, and has been so for many years, teams might find solutions just by taking a fresh look at an old problem. One way to do this is to consider making promises to patients and families, promises about how a patient dying in the health care system can expect - and therefore demand - to be treated.
A Vision of a Better System
A better health care system for the end of life would follow through on these seven promises:
- Good medical treatment:You will have the best of medical treatment, aiming to prevent exacerbations, improve function and survival, and ensure comfort.
- Patients will be offered proven diagnosis and treatment strategies to prevent exacerbations and enhance quality of life, as well as to delay disease progression and death.
- Medical interventions will be in accord with best available standards of medical practice, and evidence-based when possible.
- Never overwhelmed by symptoms:
You will never have to endure overwhelming pain, shortness of breath, or other symptoms.
- Symptoms will be anticipated and prevented when possible, evaluated and addressed promptly, and controlled effectively.
- Severe symptoms - such as shortness of breath - will be treated as emergencies.
- Sedation will be used when necessary to relieve intractable symptoms near the end of life.
- Continuity, coordination, and comprehensiveness:
Your care will be continuous, comprehensive, and coordinated.
- Patients and families can count on having certain professionals to rely upon at all times.
- Patients and families can count on an appropriate and timely response to their needs.
- Transitions between services, settings, and personnel are minimized in number and made to work smoothly.
- Well-prepared, no surprises:
You and your family will be prepared for everything that is likely to happen in the course of your illness.
- Patients and families will come to know what to expect, and what is expected of them, as the illness worsens.
- Patients and families will receive supplies and training needed to handle predictable events.
- Customized care, reflecting your preferences:
Your wishes will be sought and respected and, whenever possible, followed.
- Patients and families will come to know the alternatives for services and will expect to make choices that matter.
- Patients will never receive treatments they refuse.
- It is usually possible for patients to die at home if they so desire.
- Use of patient and family resources (financial, emotional, and practical):
We will help the patient and family to consider their personal and financial resources, and we will respect their choices about the use of their resources.
- Patients and families will be aware of services available in their community and the costs of those services.
- Family caregivers' concerns will be discussed and addressed, and respite and home aide care will be considered as part of the care plan when appropriate.
- Make the best of every day:
We will do all we can to see that you and your family will have the opportunity to make the best of every day.
- The patient is treated as a person, not a disease.
- The care team attends to the physical, psychological, social, and spiritual needs of patient and family.
- Families are supported before, during, and after the patient's death.
This sourcebook is full of examples of how others improved practice by reconsidering what they were doing, having a vision of how to do it better, and promising themselves, if no one else, that they would do a better job.
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