Dr. Sushma Shivananda
Resident Physician at National Cancer Centre, Singapore
Ethical issues in palliative care often surface because it may be difficult to outline clear boundaries about the level of care that is apt for someone with a limited life expectancy. This can lead to discord between the health care teams, patients, and family members about what comprises proper care, especially when patient approaches death. This article focuses on the ethical issues in palliative medicine and the framework for ethical reasoning in the evaluation and management of an elderly lady with advanced dementia (1)
Mrs. S was an 86-year-old lady, homebound and wheelchair assisted. She had multiple co-morbidities. She was diagnosed with Alzheimer’s dementia in 2007, with loss of executive function on follow up by a Psycho-Geriatrician.
S was admitted in 09/14 with ischemic infected chronic right heel ulcer and cellulitis surrounding left big toe gangrene for which, which she underwent, initially left (above knee amputation) AKA and followed by rehabilitation and later right AKA. Postoperatively the surgical wound was clean; however the patient was taking poorly orally and was unable to undergo swallowing assessment, as she wasn’t co-operative. Hence a nasogastric tube was inserted, which she subsequently pulled out thrice during the admission. She was started on antibiotics upon spiking temperature on POD 7 although the blood and urine cultures were negative. Subsequently she started spiking temperature again on and off from postoperative day (POD) 18, was refusing oral medications and the nurses were having difficulty serving medications in the absence of NG tube.
She was frail, uncommunicative during the first encounter, but subsequently, able to give name and age. Her ability to sit up was limited. She was able to smile, acknowledge the presence of Mrs. F, her daughter and accepted feeds only from her, however refused feeds/medicines from the nurses during the period when there was no NG tube. Her surgical wound was healing well. She didn’t appear to be in pain/distress
S, a widow for more than 20 years, mother of 2 children, son and daughter, lived with the daughter Mrs F and her family. F who was in her mid fifties, had been caring for S for more than 10 years including feeding S for more than a year as she had challenges in getting a domestic helper for S. F also had a past history of depression, not follow up by a psychiatrist or on medications. She had previously expressed suicidal ideations according to the medical social worker although she didn’t express any during our interaction with her. F expressed that she was no longer able to cope with S’s care and wanted to send her to an institution. No other family member was involved in S’s care and F was the main decision maker. There was no documentation about advanced care planning in the past.
Advanced care planning (ACP) is an ongoing process, emphasizing on bringing forth the patients’ goals and values. It is vital to explore certain elements of care such as artificial hydration and nutrition (including tube feeding, PEG), tracheostomy, invasive/non-invasive ventilation, CPR, the role of antibiotics and other common medical interventions at the end of life with the patient and family and document accordingly. ACP has been shown to improve the patient and family satisfaction as well as lessen stress, anxiety and depression in remaining family members. (2,3,4)
S was referred to palliative medicine team for prognostication and placement issues. S’s application for the inpatient hospice was rejected as she didn’t seem to satisfy the criteria for inpatient hospital admission (prognosis of < 3 months).
There was varied opinion amongst the treating doctors as to whether the NG tube should be re-inserted or not especially with F changing her mind and decisions frequently. After extensive discussion with the daughter, she finally agreed for NG tube to be inserted with the stance that there would be no subsequent NGT re-insertion if the patient pulled it out at any point in time. The patient was discharged home as per F’s wishes on POD 21 after the stitches were removed, with the support of home care hospice team. Option of inpatient hospice was offered in the event that F couldn’t cope with care of patient at home. S passed away 4 days after the discharge, likely secondary to aspiration pneumonia even before the home care team could see her and the NG tube was still in situ.
The most common framework for ethical reasoning is called “Principlism”, advocated by Beauchamp and Childress, after the four guiding principles (autonomy, beneficence, non-maleficence and justice). The four guiding principles, autonomy, beneficence, non-maleficence and justice are imperative but may not be always adequate to guide health care decisions, especially in palliative care setting due to rapidly surfacing technology, longer life expectancies in patients with significant burden of illness, varied needs of individuals coming from different cultural, religious and educational background
Autonomy: In the above case, it was hard to establish what S wanted as there was no previous ACP. According to F, S just wanted better control of pain and hence agreed for surgery. Did she have the mental capacity to decide on the surgery (AKA)? We were forced to assume that F was the health care proxy as she was the main caregiver apart from the fact that none of the other family members were involved in S’s care. In view of F’s psychiatric condition, was she accurate in her understanding of patient’s wishes and values. Did F have mental capacity for herself? Were we justified in taking our stance by using “palliative paternalism,” and sharing the burden of responsibility by taking a middle ground between paternalism and autonomy (1)?
Non-Maleficence: This is closely associated with “ “Primum non nocere” above all (or first) do no harm (5). In S’s case, was the surgery really indicated in the first place especially taking into account the patient’s previous performance status and perceived quality of life in future? What were the goals of treatment? .
Beneficence: The principle of beneficence requires that clinicians act in the best interests of their patients (1). The lack of decision-making capacity often requires recommendations by the clinician of what would be in the patient’s best interest. By the time palliative medicine were involved in S’s care, the AKA had already taken place, although it was hard to justify whether the decision for surgery was in the best interest of patient. If pain control was the prime issue, could it have been done using pharmacological measures? Although there were many uncertainties, we decided to act in S’s best interest and continue to support S’s care during the post-operative period as deemed appropriate.
Justice: Justice requires that all people should be treated well and fairly, and also that health resources be used equitably (1). As S was in the orthopedic ward, which usually has a high turnover, the primary team was having challenges in allocation of bed. S didn’t need the resources of a tertiary hospital, which has ready access to aggressive interventions. She also didn’t seem to have rehabilitation potential as deemed by physiotherapist/ nor fulfilled the criteria for inpatient hospice admission. It was also not fair to the nurses in a busy surgical ward to spend hours to carefully hand feed the patient in the absence of a feeding tube.
Is there any conclusion of the issue and what is the plan of action? Neither the principlism nor the four-box approach establishes an outcome based on how the questions in each principle/box are answered. However, it enables a systematic consideration of various aspects of the case and the linking of different ethical principles to the facts of the case. Acting in the patient’s best interest, our thoughts were that having undergone the surgery, patient should be given at least a chance to recuperate and that there was a need to investigate the fever and consider re-insertion of NG tube to support nutrition before the goals of care shifted to just best supportive measures. However, in the absence of ACP and identified surrogate decision maker, we had to respect F’s decision, assuming that she was acting in F’s best interest, supposedly not putting S through suffering.
- Fromme EK, Smith MD, Ethics in palliative care, In UpToDate Available at www.uptodate.com, Accessed Feb 25, 2015
- Singer PA, Robertson G, Roy DJ. Bioethics for clinicians: 6. Advance care planning. CMAJ 1996; 155:1689-1692
- Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 2006; 166:493-497
- Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340:c1345
Beauchamp TL, Childress JF. Principles of Biomedical Ethics. Oxford University Press Inc; 2009, 6th edition, p25, 149,155