Prolonging life at all costs: quantity versus quality

Medical advances have meant that people are living longer but, as the 2015 Global Burden of Disease data showed, the corresponding increase in healthy life expectancy was significantly less, meaning that people are also living with illness for longer. This situation creates an increased burden on health-care resources and more challenging discussions around appropriate medical interventions and intensive treatment near the end of life.

Two recent reports in The New York Times highlight this emotive and contentious issue. In the first , called “Is it better to die in America or in England?”, Ezekiel Emanuel and Justin Bekelman discuss their recent research comparing end-of-life care for patients with cancer in seven developed countries. Encouragingly, the USA had just 22% of patients dying in hospital, which is lower than in Canada, England, Norway, the Netherlands, Belgium, and Germany. However, where the USA didn’t fare so well was in use of the intensive care unit (ICU), where it was noted that 40·3% of Americans had an ICU admission in the last 6 months of life compared with less than 18% in the other six countries. Furthermore, although patient outcomes in the USA and UK are similar, the USA spends a quarter of its Medicare budget on the last year of life and has 25 ICU beds per 100 000 people, by contrast with the UK, which has only five beds per 100 000 people.

2011 poll in California showed that peoples’ main concerns about dying were not to burden their family financially by the care they received, and to be comfortable and without pain. This seems to be at odds with the reality of how people are actually dying today in the USA. The second New York Times article “Not just a death, a system failure” is a heartfelt viewpoint about this disconnect between a patient’s wishes and the reality of care. Barbara Moran tells the story of her mother’s death in the ICU, which she describes as filled with unnecessary procedures, pain, and distress, and how this has encouraged her to want to change how people die in America. However, the reasons for increased use of intensive care at the end of life are incredibly complex and the nearly 300 comments posted after the article from readers highlight the difficult ethical and logistical task ahead.

To this end, Derek Angus and Robert Truog reported in the Journal of the American Medical Association potential ways to improve ICU use at the end of life. They suggest a need to reduce inappropriate admissions through more considered gatekeeping by ICU physicians, more detailed discussions with patients and families before admission about goals for care and potential outcomes, and, lastly, reducing the number of ICU beds to create an impetus to use the resources for those who will truly benefit. They also believe that ICU physicians and staff need more training in palliative care to aid in shared decision making with families and colleagues and to help the re-evaluation of treatment goals during an ICU admission.

These suggestions are all excellent but health-care systems also need to adapt to enable such changes. The USA currently has a pay-for-service set up that rewards more treatment and investigation, and it is difficult to quantify or code for a good death. However, positive steps have been made: Medicare announced in October, 2015, that it would now reimburse doctors for end-of-life discussions. This step should help to open up this taboo subject, with both doctors and patients being better informed about personal wishes and goals.

Public perception of death and dying also needs to be addressed so that unrealistic expectations from medical treatments can be managed and death is not seen as a failure. A recent multisociety statement on the fine line between futile and potentially inappropriate treatments was the subject of an impassioned debate at the CHEST 2015 conference. Even the smallest chance of success can be seen as worth taking when your life, or the life of a loved one, is at stake, even if a patient will experience increased pain and suffering as a result. This situation makes withdrawing or refusing treatment extremely difficult, and doctors in the USA are not well supported by guidelines or criteria to help their decisions. Interestingly, a study done at Stanford University showed that 88·3% of doctors would not want invasive or intensive medical intervention at the end of their life and would opt for a do not resuscitate order for themselves.

The goal to reduce inappropriate ICU admissions at the end of life is gaining traction in both the media and in medical societies. Maintaining hope at the end of life is very important, but managing expectations and changing outlooks so that this hope is focused towards quality of life, not just quantity of life, might mean that more people get the good death that they deserve.

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DOI: https://doi.org/10.1016/S2213-2600(16)00059-X

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© 2016 Elsevier Ltd. All rights reserved.

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