- Applying the Welfare Model to an Ethically Challenging Terminal Discharge
An important element in end-of-life care determinations is encapsulating patient preferences. Many patients with advanced cancer express a desire to be cared for and to pass away at home (Higginson et al. 1998; Townsend et al. 1990). 77% of Singaporeans would prefer to pass away at home (Lien Foundation 2014). In stark contrast, only 26.7% actually do (Immigration and Checkpoints Authority Singapore 2014).
To realise the wishes of a home death, local care providers enact a terminal discharge (TD). Tan et al. describe TDs as patient and/or familial decisions for “urgent discharge so that death can occur at home” as a result of a “sudden unanticipated deterioration in a person’s health status” (Tan and Blackford 2015). TDs represent a logistical challenge that requires a hospital palliative care team, a palliative home care team and nursing care services coordinating care for patients and their family within the patient’s home. It often places significant psycho-emotional, financial and physical strain on both patients and their caregivers. Whilst recent studies have discussed the ethical issues surrounding the process and the ramifications of a TD, little has been made of the considerations surrounding the impact upon family and caregivers. [End Page 66]
This case report highlights the psychosocial and ethical issues that families face in determining a TD. In this scenario, our patient makes the decision for terminal discharge and refuses any treatment. His family refuses to accede, citing difficult symptoms and caregiver stress as primary reasons. I will look at the role of ethical principles within this case and how the issue was eventually resolved by utilising Krishna’s Welfare Model in determining the clinical team’s overall duty of care to the patient (Krishna et al. 2015).
Mr. A. was a 49-year-old Chinese gentleman with metastatic cardio-esophageal adenocarcinoma diagnosed in June 2015. He underwent palliative chemotherapy with little tangible effect upon the disease progress. By November 2015 he was found to have extensive local disease with metastases to lymph nodes, omentum1 and peritoneum. The decision against further life-prolonging treatment was made.
By the time of referral to the palliative care team, Mr. A had already deteriorated to an Eastern Cooperative Oncology Group (ECOG) performance status of 3.2 A CT scan at the time revealed “progression of primary tumor, conglomerate lymphadenopathy at the coeliac axis suspicious and diffuse omental nodularities”.3 Unsurprisingly, the patient was troubled by severe dysphagia resulting in poor oral intake. There were also recurrent episodes of hematemesis. In an effort to ameliorate these symptoms, Mr. A initially consented to a bedside nasogastric tube insertion for the purpose of venting and feeding. When attempts to site the nasogastric tube insertion failed, Mr. A refused a scope-guided nasogastric tube insertion. Mr. A also declined medications to help with his symptoms of nausea and vomiting. He also declined any analgesia for his constant epigastric pain. The patient remarked that he had lost his trust in the medical team, stating that various teams throughout his cancer journey had always raised his hopes only to dash it later. To Mr. A, life was no longer worth living and all he wanted was to go home and wait for death.
Mr. A was married and lived with his wife and two sons (aged 13 and 18). His youngest son was in secondary school while his oldest son was studying in university. Mr. A had been a forklift driver and his wife worked as a part-time cashier at a food court. His wife described his personality as “headstrong”.
The Ethical Dilemma
Mr. A repeatedly requested for a terminal discharge but declined any offers to help alleviate his symptoms. His wife, fearful of the responsibility of caring for [End Page 67] Mr. A with his continuing symptoms, was hesitant to acquiesce to his request. In Mr. A’s opinion, he felt that he was being held hostage in hospital against his will. Mrs. A repeatedly begged the hospital to “do something about it”, particularly when Mr. A was resistant to an inpatient hospice placement.
As days passed...