Valhalla, New York, United States
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I walked into the emergency department with a sense of trepidation. The patient I was evaluating was Mrs. G, a woman whom I had cared for in the hospital a few months earlier. Now she was back from the nursing home with more shortness of breath. Having received a brief history from the ED physician, I was aware of the severity of her pneumonia and her worsening respiratory status. Her two devoted sons were at her side and remembered me with a mixture of fear and relief. I examined her briefly and then turned to them. I explained the clinical and diagnostic test findings, our working diagnosis, and the immediate plan for antibiotics and oxygen support. Then, after taking a deep breath, I began one of the most dreaded – yet essential – parts of my job: the discussion of advance directives.
Advance Directives (AD) are documents through which individuals state how they would want decisions on medical treatment to be made when they can no longer make the decisions themselves.1 These include living wills, healthcare proxies, and do-not-resuscitate orders.2,3 Some people have also used AD as a means of expressing their dying thoughts and wishes to their families.4
Advance directives have been shown to improve the satisfaction of patients and family members5 as well the quality of care before death.6 Those who completed AD received palliative and hospice services more frequently and were less likely to be hospitalized or receive ineffective treatments.6 Previous research suggests that AD discussion does not increase depression, neither for patients nor for families.7 Physicians view the presence of AD as a favorable step towards discussing end-of-life decision making with families.8
There are many factors that influence completion of AD. Older age was associated with increased chances of AD completion.9 Patients with lower levels of household incomes were less likely to have documented AD.6 Research has shown that racial and ethnic differences also play a role: Whites are more likely to complete AD when compared to patients of Black or Hispanic ethnicity.10 Moreover, each country has its own set of guidelines and specifications related to the framing of AD and their legal validity.4,8 There are also significant cultural barriers reported that preclude AD discussions with patients and families.8,11,12 As the content of AD can be ambiguous,9 consultation with experts have helped in some situations.13,14
In the absence of clear written directions, knowing what a loved one would have wanted can be more challenging than one expects. As a physician in the relatively nascent stages of his career, this is one of the most difficult conversations I have had to face. I have lost count of the number of times when the guilt and burden on the families is palpable – when they know their parent/sibling/spouse is dying, yet they are understandably paralyzed with doubt and uncertainty. Who makes the decision to limit care? Would the person have wanted to go through this? It is, thus, very important to have prior guidance as to what the person would have wanted towards the end of their life.
As I sat in that windowless room and talked to the family of Mrs. G, they realized the gravity of her current condition. They requested a few minutes to confer privately. After I returned, they stated that they wanted to continue her current care but wished to institute a “Do Not Resuscitate” order. Given everything that she had been through in life, they requested that if she showed any signs of distress, she should be started on pain medications to keep her comfortable.
I reassured them that we would continue to treat her as per our original plan, but would not resort to aggressive resuscitation measures if she deteriorated. But Mrs. G was much sicker than we had anticipated. Early in the morning, I called the family with a heavy heart to inform them that she had died peacefully. They thanked me and the hospital staff profusely for everything we had done.
Mark Twain once remarked, “Courage is not the lack of fear. It is acting in spite of it.” To me, true courage is being able to calmly decide and convey what you would want done at the end of your life. Talking to loved ones about your own advance directives and asking them about theirs will help avoid a lot of confusion, heartache, and guilt in the future.
- Evans N, Bausewein C, Menaca A, Erin A, Higginson IJ, Harding R, Pool R, Gysels M. A critical review of advance directives in Germany: Attitudes, use and healthcare professionals’ compliance. Patient Educ Couns. 2012;87(3):277–88.
- Lorda PS, Velázquez TMI, Cantalejo BIM. Advance Directives in Spain: Perspectives from a Medical Bioethicist Approach. Bioethics. 2008;22(6):346–54.
- The World Medical Association Statement On Advance Directives (“Living Wills”) by the WMA General Assembly, Helsinki 2003. https://www.wma.net/policy/. Accessed: April 14th, 2019.
- Trarieux-Signol S, Bordessoule D, Ceccaldi J et al. Advance directives from haematology departments: the patient’s freedom of choice and communication with families. A qualitative analysis of 35 written documents. BMC Palliat Care. 2018 Jan 2;17(1):10.
- Detering, K. M., Hancock, A. D., Reade, M. C et al. The impact of advance care planning on end of life care in elderly patients: A randomised controlled trial. BMJ. 2010.340, c1345.
- Saeed F, Xing G, Tancredi DJ et al. Is Annual Income a Predictor of Completion of Advance Directives (ADs) in Patients With Cancer. Am J Hosp Palliat Care. 2019 May;36(5):402-407.
- Wright, A. A., Zhang, B., Ray, A. et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 2008.300, 1665–1673.
- Peicius E, Blazeviciene A, Kaminskas R. Are advance directives helpful for good end of life decision making: a cross sectional survey of health professionals. BMC Med Ethics. 2017 Jun 5;18(1):40.
- de Heer G, Saugel B, Sensen B et al. Advance Directives and Powers of Attorney in Intensive Care Patients. Dtsch Arztebl Int. 2017 Jun 5;114(21):363-370.
- Ko E, Lee J. Completion of advance directives among low-income older adults: does race/ethnicity matter?. Am J Hosp Palliat Care. 2014 May;31(3):247-53.
- Miki R, Becker CB, Ide K et al. Timing and facilitation of advanced directives in Japan. Arch Gerontol Geriatr. 2018 Nov – Dec;79:83-87.
- March E, Baumann A, Audibert GG et al. Advance directives and the family : French and American. Perspectives. 2009
- Schoffner M, Schmidt KW, Benzenhofer U et al. Patienten – verfügung auf dem Prüfstand: Ärztliche Beratung ist unerlässlich. Dtsch Med Wochenschr 2012; 137: 487–90.
- Pfirstinger J, Kattner D, Edinger M et al. The impact of a tumor diagnosis on patients’ attitudes toward advance directives. Oncology 2014; 87: 246–56.
AKSHAY KHATRI is a third year resident physician in Internal Medicine at Westchester Medical Center in New York, USA. Apart from medicine, he is broadly interested in movies and books. Having worked in diverse rural and urban healthcare environments in India and the United States, he hopes to leverage his strengths in his future fellowship in Infectious Diseases.