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Empowerment for The Chronically Ill Patient

by James Trainor, DrNP

All chronic illnesses are life-limiting by definition alone. It has long been reported that chronic diseases are the leading cause of death worldwide. The line that formerly distinguished between chronic disease and terminal illness has been blurred with advances in medicine and treatments aimed at prolonging life. As a result, people are living longer. Numerous ethical issues arise when we try to answer the question of quality versus quantity as the end-of-life nears.

There is mounting evidence that the current health care crisis and the burden placed upon Medicare will worsen dramatically in the very near future. The first of the baby-boomer generation reached retirement age in 2011, increasing the recipient pool drastically. The financial burden associated with the treatment of the chronic/terminal diseases associated with our aging population is astounding. It has already been offered that a staggering 12% of our total GDP in health care goes directly to providing life sustaining treatment at the end-of-life (CDC, 2011). Even more alarming is that, often times, this care occurs despite the wishes of the individual.

The majority of deaths in the United States occur in health care settings (~75%). Deaths in hospitals and long-term care facilities accounts for ~ 60 % while the percentage of occurrences in nursing homes or hospice facilities hovers around 15%. As a result, it is easy to infer that as the older population grows there will be even greater demands on the nation’s health care systems-including the demand for costly and often futile end-of-life interventions.

It should be the ultimate goal of the health care team to respect human dignity even at times when the client’s wishes differ from the provider’s thoughts of what is morally right. The onus of defining chronic illness and quality of life should be that of the recipient of care, as they are the ones who truly understand the uniqueness of their own illness. Importantly, only the recipient of care can assume management of the risk/benefit ratio pertaining to quality versus quantity of life while taking into account their own views on the multitude of issues encountered as the end-of-life nears. Confounding this argument even further are the social and political times we find ourselves in; an era of misinformation (i.e. the debate over immunizations and their link developmental disorders) and “alternative facts” being propagated in all aspects of society.

Research has shown that care provided in ICU settings is focused on preserving life often times despite the cognitively intact individual’s expressed desires. The Institute of Medicine calls for humane care at the end-of-life even if a person’s choices differ from typical healthcare practices. Terminally-ill people often fear needless and prolonged suffering, uncontrolled pain, and expensive costs of dying and they worry about lifesaving technology and futile treatment. Furthermore, certainly no single agency (other than hospice/palliative care) is addressing the illness experience of the client and their family. This current approach only increases a client’s frustration with the health care system while simultaneously producing higher incurred costs.

Hospitals and our current health care system largely remain segregated in the delivery of care, despite attempts to provide comprehensive care. Each component of the system only addresses that specific need of the individual, be it cardiology, nephrology, etc., and presently there is no single entity to manage an individual’s entire disease. Healthcare providers of care are being beckoned to adequately address the multi-dimensional needs of the client and family. The system has not yet adapted to meet the needs of individuals with chronic conditions, but much can be learned from the experience of hospice and palliative care providers.

The care of the chronically and terminally ill needs to be revisited as times have changed and health care requirements have evolved. What is necessary is the development of a partnership between provider and recipient of care. This partnership must be rooted in mutual trust and the sharing of information in terms that are both understandable and valid. Only when such an endeavor is pursued can the system be transformed from an authoritative/paternalistic enterprise to a holistic/comprehensive one; one that respects the rights of autonomy and self-determination.

The concept of empowerment is especially relevant to the chronic/terminally ill patient population. As individuals progress through the illness continuum our interactions with them need to maximize their involvement in decision making. As a result, educating patients and their families about their rights and providing them with unbiased information regarding their disease process presents the basis for providing empowered, holistic, and ethical care.

Lastly, the current perception that advanced care planning will adequately direct the provision of care is not substantiated. Too many times the wishes of cognitively capable adults are ignored in the delivery of often painful and futile treatments aimed at prolonging life, when in fact these insults often only add to a patient’s suffering. Individuals, across all spectrums of care, should be encouraged to discuss their wishes with their loved ones and every effort must be made to honor those desires.

The process of empowerment is a constantly changing one and as such individual needs and desires can change throughout the continuum. Discussions regarding preferences at end-of-life should not begin only when deemed terminal, rather this author believes the process should begin while healthy and continue until the last days of care. What is of utmost importance is that discussions regarding the desire for a dignified death begin prior to the potential for diminished cognitive capacity.

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