THE GAPING HOLE IN ACUTE TREATMENT
Nowadays, when you wake up dying, it may take months or years to reach the end of life. Dying today can be costly in every way.
“Improvements in medical science and healthcare have gradually changed the nature of dying. Death is no longer predominately likely to be the sudden result of infection or injury. Now it is more likely to occur slowly, in old age, and at the end of a period of life-limiting or chronic illness,” according to the National Institute of Health’s (NIH) 2004 Statement on Improving End-of-Life Care.
Even a sudden diagnosis of a terminal condition can take months, even years to be realized. All of this time you will be living in the healthcare system, subsisting as a patient.
In this light, your quality of care will be critically important. Equally critical and equally important will be being prepared for the end-of-life. Few people — 27 percent nationally — have made even minimum preparations. Given the demands and complexities of the modern American healthcare system, even the recommended preparations may prove to be grossly inadequate. More, much more, is needed. More than the reform of the healthcare system is required for the needs that may arise. Patients and caregivers must prepare themselves in ways they may not be able imagine with little help or organized assistance.
This blog offers a perspective on the problems facing patients and caregivers confronting the indifferent, disorganized and costly healthcare system in which they are likely to find themselves.
End-of-life may sound like a euphemism for death, but it is not death as most of us understand it. And since most of us don’t understand end-of-life we can hardly be prepared to deal with it.
Again, NIH offers an explanation: “Life is a continuum and individuals traverse this continuum facing illnesses and limited functionality. The end-of-life process includes numerous transitions: physical, emotional, spiritual and financial. ”
The message here is that even though you may have reached the end-of-life, life may continue for some time and so you will have to deal effectively with this transition for some time. If you are unable to help yourself, you will need a caregiver. End-of-life preparation for your caregiver means knowing and understanding your end-of-life wants and needs as well you do. That requires intimate communication. NIH concluded: “Enhanced communication among patients, families and providers is crucial to high-quality end-of-life care.”
What little progress has been made in the nine years since the NIH report has been made in caregiving for chronic conditions. In the Pacific Northwest, this progress is most visible in the care and treatment of Alzheimer patients. Alzheimer’s disease is the very definition of a chronic condition, what I describe as a caregiver’s marathon–an endurance contest for patient and caregiver. Significant support, training and resources are directed at Alzheimer’s and similar marathon diseases. With marathon diseases, there is plenty of time for caregivers to learn their role and for the healthcare system to focus its capabilities on the patient.
Overlooked, in my experience, has been the plight of the acutely ill patient for whom time is limited and daily treatment is urgent. Long term care for acutely ill patients has not been adequately addressed and the acutely ill patient in need of on-going urgent care has no place in the contemporary healthcare system. For the acutely ill, treatment remains urgent until death because care that is delayed or denied is fatal.
Broadly defined, acute treatment is short-term, highly technical and is delivered in a hospital or similar medical institution. Once conventionally defined acute treatment has been delivered, the patient is turned out into the chronic care system whose standard of care is insufficient. By that definition, a terminally diagnosed patient, for example, received acute care for exactly eight of her 531 days of survival: four days hospitalization for tumor surgery and four days in ICU for an emergency room visit immediately before her death. The remainder of this patient’s treatment–523 days–was in chronic care where time was not critical.
Both the patient and caregiver seeking urgent care for an acute condition face insurmountable obstacles obtaining needed treatment in the chronic care system that pervades the current American healthcare system. This is a hardship that saps the strength, energy, resolve and hope of the acutely ill facing the end of life.
Aligning acute illness and its requirement for on-going urgent care is just one more example of the acute and urgent need to reform the healthcare system. The healthcare delivery system cannot remain disconnected from the treatment needs of patients.
“We are in a labyrinth without a map,” says author Katy Butler in her 2013 book, Knocking On Heaven’s Door: The Better Path to a Better Way of Death, about the prolonged and difficult path of death faced by patients and caregivers across America today.
Definitions of Acute Care
Standard medical definitions for acuity emphasize the singular attribute of time pressure. Bulletin of the World Health Organization 2013;91:386-388
(Acute care is)short-term medical treatment, usually in a hospital, for patients having an acute illness or injury or recovering from surgery. The American Heritage® Medical Dictionary Copyright © 2007
Acute care is a level of health care in which a patient is treated for a brief but severe episode of illness, for conditions that are the result of disease or trauma, and during recovery from surgery. Acute care is generally provided in a hospital by a variety of clinical personnel using technical equipment, pharmaceuticals, and medical supplies. Hospitals Today from Conneticut.gov Web site.