Lentis/Technology and Quality of Life for the Terminally Ill

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Patient connected to life support devices

The development of medical technology in the past century has greatly affected how people deal with diseases. While in some cases the disease is cured; in others, only the symptoms of the diseases are managed. Now, people with terminal illnesses are able to live far longer, and a majority of deaths in the US are due to terminal illness.[1] These advancements come at a price, and new social issues arise concerning extension of life versus quality of life.

Introduction[edit]

Medical Technology[edit]

As the medical technology industry develops, new devices allow individuals to overcome formerly fatal conditions. There are many examples of such technologies:

  • Mechanical ventilation assists the breathing of patients with lung conditions.[2]
  • Feeding tubes and IV lines provide nutrients for patients unable to eat or drink.[3]

Medical technology aims to directly treat illnesses; the development of antibiotics lead to successful cures for many bacterial infections such as tuberculosis.[4] However, for many chronic illnesses, such as dementia, cancer, and heart disease, there is no known cure. Available treatments focus on symptom management and slowing progression of the disease. At the end stages of terminal illnesses, medical technologies described above are often implemented to prolong lives.

Quality of Life & Technology[edit]

Quality of life can be described as a combination of a patient's physical, emotional, and social well-being. In addition to pain management, other elements such as physical independence (the ability to walk and eat independently), support from the patient's family, and emotional health are factors in quantifying quality of life.[5]

In symptom management, medical technology does not always consider the quality of life of its users. Many devices are intended for short term use, where quality of life is exchanged for its function. The devices described above are all examples of technologies that exchanges quality of life to maintain life.

  • Mechanical ventilation requires a patient to be connected to a machine, which limits the patient’s movement and impedes them from talking or eating properly.
  • Insertion of feeding tubes is an invasive procedure, as it commonly involves inserting a tube into the stomach.[3] Along with general movement restrictions, it has been reported that Advanced Dementia patients are often physically restrained and sedated to prevent them from pulling the tube out.[6]

This tradeoff becomes an issue for terminally ill patients, who may need life support for extended periods of time to slow their worsening condition. If the treatments only maintain life rather than treat the disease, the question arises whether using the technology is worthwhile if it seriously detracts from the terminally ill person's quality of life.

Social Impact of Life-Prolonging Technology[edit]

Terri Schiavo[edit]

The events surrounding Terri Schiavo illustrate the social conflicts that life support technology brings about. In 1990, Terri was found unconscious in her apartment after suffering cardiac arrest. Terri suffered massive brain damage and was declared to be in a persistent vegetative state months later. Terri was sustained by artificial hydration and a feeding tube. Years later, her husband and legal guardian, Michael Schiavo petitioned for removal of her feeding tube. Her parents, Mary and Robert Schindler, opposed this on the notion that Terri could recover.[7] This brought about questions of whether Terri's condition could improve, what she would have wanted, and the legalities of withdrawing treatment.

Most medical experts declared Terri to be in a persistent vegetative state with little to no hope of recovery. A series of tests showed no higher brain function. However, the functional parts of Terri’s brain allowed her to go through cycles of wakefulness and sleep, breathe on her own, and respond to stimuli, which lead observers to believe that Terri is conscious and may recover. In the end, evidence suggests that it was medically clear that Terri’s state was irreversible.[7] Many interpret this as medical permission to end life support, however the decision must be made based what Terri would want.

Ethically, it is important that Michael's decisions represent what Terri would want for herself. Terri was not suffering because she had no higher cortical function to experience pain. She had no living will but Michael claims that Terri had stated “I don’t want to be kept alive on a machine”, referring to living in a persistent vegetative state.[7] However, this detail became a point of contention. The Schindlers argued that Terri may recover from PVS, so her preference to stop treatment does not apply.

In the end, Terri’s fate became a legal battle. In Terri’s case, Florida appointed her husband as the decision maker. While Florida district courts approved the removal of the feeding tubes, Florida Governor, Jeb Bush, reversed the decision with Terri’s law. Terri’s law was found by Florida courts to be unconstitutional and the case escalated to the federal level when Congress passed Terri's Law II. In the end, federal courts would not hear the case, Florida court decisions. Terri's feeding tubes were removed in 2005.[8]

Participants[edit]

Media attention made Terri’s case a national debate. Religious groups, chiefly Protestant Christians and Catholics, opposed feeding tube removal. They value sanctity of life and fear that violation thereof could lead to support of abortion.[9][10] Disability advocacy groups, such as Not Dead Yet also oppose feeding tube removal, fearing it would lead to discrimination against the severely disabled.[11] Other Organizations, such as the American Civil Liberties Union supported the removal of feeding tubes on the basis that Terri's right to deny treatment should be honored.[12]

Social Impact[edit]

Media exposure of the Terri Schiavo case affected public opinion of end of life treatments. Surveys of the public showed that most do not approve of intervention by government officials. Public opinion of the removal of Terri’s feeding tubes is very evenly divided, but fewer Americans disapproved of the removal [10]. Overall, awareness of end-of-life decisions rose as the number of advance directives and living wills made spiked after Terri’s death.[13] While Terri Schiavo's case should have been kept private, out of the public and political realms for her sake, it did bring about important discussion of social and ethical issues that needed to be addressed with the advent of life-support technologies.

Brittany Maynard[edit]

Brittany Maynard chose physician-assisted death over potentially life prolonging treatments. At the start of this year, Brittany was diagnosed with brain cancer. Despite undergoing treatment, she was given six-months to live in April. Having researched the proposed treatment plan, Brittany pursued physician-assisted death over what she deemed to be an unbearable course of radiation.[14] Thus, she moved to Oregon, where physician assisted suicide is legal through the Death with Dignity Act, and passed away on her own terms on November 1st.[15][16]

With the help of Compassion and Choices, Brittany promoted the right-to-die movement in hopes that more states will legalize physician assisted suicide.[16] The Vatican opposed her decision based on its pro-life position.[17] Many medical professionals in the US still fear that permitting euthanasia could lead to inappropriate use by the mentally ill.[18] Through her actions, Brittany has revitalized the national conversation over euthanasia, this time reaching the younger generation.

Both the Schiavo and Maynard cases represent the social, ethical, and moral issues brought about by life prolonging technology. Individual views on this sensitive topic are based on unique value systems, but the nation now favors greater freedom over end-of-life decisions. These cases also demonstrate the ability of social values to push back against the use of technology.

Society and Death[edit]

Death as a Disease[edit]

So why is there a push against certain medical technology? Medicine eradicated diseases and extended lives. In exchange for longer lives patients endure decreased quality of life at older ages. Futurists term the 21st century as the Century of Biology, expecting that genomics will further decrease disease. It is likely that medicine will extend life further. New treatments address illnesses that have passed infectious diseases in death toll.[19]

From the prevalence of available treatments, some are led to believe that all disease can be cured. This notion extends further to the idea that death itself is a disease. Wikipedia lists ten currently researched, possible approaches to reverse aging.[20] In September of 2014, Google announced a subsidiary called Calico. It created a $1.5 billion research venture with the goal of curing death.[21] They have proposed to achieve this goal by reversing the aging process from a cellular level. Feasibility is yet to be seen, and the consequences of such actions can only be speculated.

Misattributions[edit]

However, some overestimate the ability of technology to decrease death rate. The greatest decline in death rates happened before the introduction of antibiotics and vaccines. Nutrition and sanitation explain most of the decline in death rate.[22] Comparatively, the introduction of medical technology has marginal effects.

The societal perception that death is a disease may result from the misattribution of medical technologies to increases in lifespan. By definition, terminal illnesses do not have a cure, yet a "battle with cancer" is common terminology.[23] The word battle implies that this is a two-sided issue and that a loss, or death, results from a lack of will. Many also consider chemotherapy as a cure; however, doctors prefer the term "treatment with curative intent".[24] Chemo is actually a poison that attacks tumors more than other tissue.

In the U.S., this view of death and disease is misguided, and may factor into technologies that extends life at the expense of life quality. As a result, backlash against certain treatments is spurred by the realization of some that medical treatment may cause unintended social dilemmas. The benefits of treatment may not always outweigh the costs.

Generalization[edit]

Moral of the Story[edit]

Viewing death as a disease has given the misconception that it can be controlled. We have contended that death is not a disease and that life extending technologies implemented with this view lead to undesirable decreases in quality of life for terminally ill patients.

This result is generalizable to the statement that the illusion of controlling systems we don’t fully understand leads to problems we can’t anticipate and ethical questions concerning technological implementation.

Parallel Example[edit]

Genetically modified organisms (GMOs) are widely used in agriculture. The first use of GMOs decreased the need for herbicides and pesticides by creating naturally resistant plants. This technology has been implemented to increase crop yield to feed a growing population. However, the long-term effects of human consumption of GMOs are not well documented.[25] European countries strongly oppose GMOs, and U.S. opposition increases.[26] By using GMOs as a solution despite limited understanding, a new risk has been introduced into the system.

Implication for Engineers[edit]

If a poor solution is presented well and is aimed at a sizable market, financial markets will make it a reality. It will then be marketed to consumers. It is the ethical responsibility of the engineer to ensure that the sociotechnical consequences of his solution to a problem are understood. This is the last opportunity to prevent repercussions.

Opportunities for Further Study[edit]

Policy and technological differences between countries may be able to demonstrate technology's ability to extend life. They could explain differences in perceived quality of life, or expose ethical questions surrounding certain practices. These natural experiments would be helpful to fully understand this issue.

References[edit]

  1. Center for Disease Control. (2013). Deaths: Final Data for 2010. http://www.cdc.gov/nchs/data/nvsr/nvsr61/nvsr61_04.pdf
  2. Mechanical Ventilation. (2013). Retrieved from http://emedicine.medscape.com/article/304068-overview#aw2aab6b2
  3. a b Feeding tube insertion - gastrostomy: MedlinePlus Medical Encyclopedia. Retrieved from http://www.nlm.nih.gov/medlineplus/ency/article/002937.htm
  4. Sharma, S. K., & Mohan, A. (2013). Tuberculosis: From an incurable scourge to a curable disease - journey over a millennium. The Indian Journal of Medical Research, 137(3), 455–493.
  5. Morris, J. N., Suissa, S., Sherwood, S., Wright, S. M., & Greer, D. (1986). Last days: a study of the quality of life of terminally ill cancer patients. Journal of Chronic Diseases, 39(1), 47–62.
  6. Rabin, R. C. (2010, August 2). Feeding Dementia Patients With Dignity. The New York Times. Retrieved from http://www.nytimes.com/2010/08/03/health/03feed.html
  7. a b c Quill, T. E. (2005). Terri Schiavo — A Tragedy Compounded. New England Journal of Medicine, 352(16), 1630–1633. doi:10.1056/NEJMp058062
  8. Terri’s Story: Timeline. (2014). http://www.terrisfight.org/
  9. Vatican addresses Terri Schiavo case, end-of-life issues. (2007). http://www.catholicnewsagency.com/news/vatican_addresses_terri_schiavo_case_endoflife_issues/
  10. a b Blendon RJ, Benson JM, & Herrmann MJ. (2005). The american public and the terri schiavo case. Archives of Internal Medicine, 165(22), 2580–2584. doi:10.1001/archinte.165.22.2580
  11. Drake, S. (2010, March 31). Fifth Anniversary of Terri Schiavo’s Death - A History Lesson. http://www.notdeadyet.org/2010/03/fifth-anniversary-of-terri-schiavos.html
  12. U.S. Supreme Court Protects Liberty by Upholding Terri Schiavo’s Decision to Discontinue Medical Treatment, Says ACLU of Florida. (2005). https://www.aclu.org/technology-and-liberty/us-supreme-court-protects-liberty-upholding-terri-schiavos-decision-discontin
  13. Erikson, J. (2006). Terri Schiavo Impact Continues One Year After Her Death: Oncology Times, 28(5), 6–7. doi:10.1097/01.COT.0000294738.32515.8e
  14. Maynard, B. (2014, November 2). My right to death with dignity at 29. http://www.cnn.com/2014/10/07/opinion/maynard-assisted-suicide-cancer-dignity/index.html
  15. Death with Dignity Act. (1997, October 27). Oregon Health Authority. http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx
  16. a b Scott, A. (2014, November 4). Should Brittany Maynard Have Had the Right to Doctor-Assisted Suicide? - US News. http://www.usnews.com/opinion/articles/2014/11/04/should-brittany-maynard-have-had-the-right-to-doctor-assisted-suicide
  17. Vatican official condemns Maynard assisted suicide case in U.S. (2014, November 4). Reuters. Vatican City. http://www.reuters.com/article/2014/11/04/us-usa-assistedsuicide-vatican-idUSKBN0IO1UU20141104
  18. Bever, L. (2014, October 8). Cancer patient Brittany Maynard, 29, has scheduled her death for Nov. 1. The Washington Post. http://www.washingtonpost.com/news/morning-mix/wp/2014/10/08/terminally-ill-brittany-maynard-29-has-scheduled-her-death-for-nov-1/
  19. Stanford Center for Cardiovascular Technology. Current Research. http://crci.stanford.edu/
  20. Wikipedia. Life-Extension. http://en.wikipedia.org/wiki/Life_extension#cite_note-110
  21. Popper, Ben. (September, 2014). The Verge. Google's Project to 'Cure' Death. http://www.theverge.com/2014/9/3/6102377/google-calico-cure-death-1-5-billion-research-abbvie
  22. Center for Disease Control. (1999). Achievements in Public Health. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm4829a1.htm
  23. Google Ngram Viewer. Frequency of the term Battle with Cancer. https://books.google.com/ngrams/graph?content=battle+with+cancer&year_start=1800&year_end=2000&corpus=15&smoothing=3&share=&direct_url=t1%3B%2Cbattle%20with%20cancer%3B%2Cc0
  24. American Cancer Society. (2013). The Goal of Chemotherapy.
  25. O'Callaghan, Maureen. (2005). Annual Review of Entomology. http://www.annualreviews.org/doi/abs/10.1146/annurev.ento.50.071803.130352
  26. Electronic Journal of Biotechnology. (2003). Why Are the Europeans Opposed to GMOs?. http://www.scielo.cl/scielo.php?pid=S0717-34582003000100008&script=sci_arttext