Mrs. Yeung is an 87-year-old woman with advanced dementia. She is widowed and has been living at an old age home for the past five years. Over the last couple of years, she has become bedbound and nonverbal. She no longer recognizes her daughter Karen who visits regularly. She requires assistance with feeding and had lost over ten pounds in the last year due to poor oral intake.

Over the last week, Mrs. Yeung was admitted to the hospital for increased lethargy. She was found to have a urinary tract infection and was treated with antibiotics and intravenous fluids. While she became more alert after a couple of days of treatment, she had failed her swallowing evaluation. The speech therapist documented that she was at high risk for aspiration and recommended non-oral feeding.

The doctor on the geriatrics ward discussed the question of nasogastric feeding tube insertion with Karen. He explained that Mrs. Yeung’s reduced food intake and swallowing difficulties are part of her advanced illness and suggested careful hand feeding as an alternative.

Karen replied, “Mom has already suffered enough. She doesn’t recognize me anymore and she can’t communicate. She just lies there. Putting in a feeding tube would be torturing her more.” Karen opted for careful hand feeding. Her decision was documented in an advance care planning document which was sent back to the old age home when Mrs. Yeung was discharged.

Man Yi, a personal care worker at the home, found it very difficult to continue to feed Mrs. Yeung. She is very weak and could only take in a few spoonfuls of food at a time. Mealtimes would take over an hour and Man Yi cannot afford to take that time when she has many other residents to care for. Besides, noting the speech therapist’s assessment, she is concerned that she would cause Mrs. Yeung to have an aspiration episode while feeding her. She raised her concerns with the nursing supervisor.

The nursing supervisor replied, “Let’s have a talk with her daughter then. If she doesn’t want to insert a feeding tube like everyone else, then she needs to either come herself to assist with her meals or arrange for someone who can. What if she chokes? Then the responsibility would fall on us. Besides, this ACP document belongs to the hospital. I’m not sure if we’re obligated to follow this anyway.”

During the meeting, Karen was surprised and upset upon hearing the old age home’s refusal to continue careful hand feeding. She exclaimed, “At the hospital, they said that she can continue to be fed by the staff here! I work full time at the post office and can’t come to feed her myself. I cannot afford to hire a maid!”

Man Yi felt at a loss for what to do. She recognizes the daughter’s wish to keep Mrs. Yeung comfortable but she cannot manage her workload if it takes so long to feed Mrs. Yeung. Her nursing supervisor suggested that they should send Mrs. Yeung back to the hospital. It seems that they don’t have another option.

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Themes: advance care planning, dementia, nutrition and hydration, nursing home, family determination, careful hand feeding

- Dr. Tak Kwan Kong, Honorary Consultant Geriatrician/ Clinical Associate Professor (Honorary)/ Clinical Lecturer (part-time), Department of Medicine & Therapeutics, Prince of Wales Hospital, The Chinese University of Hong Kong

1. What are the pros and cons of careful hand feeding vs tube feeding in advanced dementia patients with swallowing problems?

2. How should advance care planning be done for advanced dementia patients with unsafe swallowing?

For a patient who has a serious illness, planning on future medical and personal care at the end of life can be done via an advance care planning (ACP) process involving the patient, family and healthcare workers and takes into consideration factors such as disease prognosis, benefits and burdens of treatment, values and preferences of the patient. Usually ACP is a process of communication intended for mentally competent patients. In the Hospital Authority of Hong Kong, the term ACP extends beyond communication with mentally competent patients to include that with family members of mentally incompetent patients. Decision-making regarding the patient’s future medical or personal care should be done by consensus building among members of the healthcare team and with the patient’s family, based on the best interests of the patient.

Mrs. Yeung suffered from advanced dementia, could not communicate, and was judged by the geriatrician as lacking mental capacity to consent, but her wish may still be implied and understood from her body language (e.g. repeatedly pulling out the nasogastric tube). While her daughter, Karen, cannot insist on, or consent to, a treatment on behalf of the patient, her views help to understand Mrs. Yeung’s previously expressed views on end-of-life decisions. The decision-making process on dysphagia assessment and management in advanced dementia patients is complex and is ideally a combined effort of the multidisciplinary team. The speech therapist documented that Mrs. Yeung was at high risk for aspiration and recommended non-oral feeding. However, dementia patients may under-perform on formal swallowing tests because of distress, unfamiliar test environment (e.g. tilt-table), and distasteful artificial barium-modified food. The observations of the usual swallowing ability of Mrs. Yeung during meal time by nurses and family members should also be considered when assessing the safety of oral feeding. Geriatricians have a role to diagnose and treat conditions impairing swallowing, e.g. delirium, depression, oral candidiasis, and discontinue medications causing dry mouth and impairing swallowing (e.g. antipsychotics). In the ACP process, it is important to consider the context, including the available support systems and resource availability. While the geriatric ward where Mrs. Yeung stayed had the appropriate support and resources to practise careful hand feeding, the aged home where Mrs. Yeung was subsequently discharged to did not and this may result in rebound hospitalizations. Careful transitional care planning and collaboration between hospital and aged home staff are important for success of smooth transfer of care from hospital to the community. The pros and cons of careful hand feeding vs tube feeding (see above) should therefore be carefully reviewed and discussed before drawing up an individualized advance care plan that is practicable.

3. How to optimize clinical ethical decisions when faced with ethical and legal dilemmas in the care of advanced dementia patients?

The ethico-legal dilemmas in this case are that while the hospital multi-disciplinary team (experts) recommended careful hand feeding in their ACP (not legally binding) for an advanced dementia patient whose swallowing was judged unsafe by the speech therapist, the aged home staff (frontline) did not have the supporting practice (education, operational policy and human resources) and expressed litigation concern. A common argument for not starting tube feeding in this situation is that the burden of tube feeding is high and the intervention adversely impacts on the quality of life of terminally ill patients. Despite Mrs. Yeung is in an advanced stage of dementia, she has just been recovering from an acute illness (urinary tract infection), it is thus arguable to label her as terminally ill. Moreover, Mrs. Yeung had lost over ten pounds in the last year due to poor oral intake, and was likely having malnutrition, which reduced her immunity and made her susceptible to infections. Tube feeding, on a short-term basis, may be a quick treatment to restore her nutrition and body weight and optimize her condition. However, quality studies are lacking to address whether or not tube feeding can improve nutritional status for advanced dementia patients. The British Geriatrics Society and the Royal College of Physicians recommended that if in doubt, a trial of nasogastric feeding with clear agreed objectives may be appropriate in managing dysphagia in older people towards the end of life. Tube feeding should then be withdrawn if failing to achieve the objectives.

There are many ways of thinking about ethical issues in geriatrics that help to reduce our shortsightedness in order to benefit patients and ourselves. In addition to the usual "mainstream" ethical approach (based on the ethical principles of autonomy, beneficence, justice, non-maleficence), there are also narrative approaches which take into consideration values and expectations, limitations/uncertainties and concerns, and the context (patient-doctor-family-care worker, hospital-community). This requires active listening and dialogue; commitment, compassion, and courage to approach the ethical dilemmas in caring for elderly people. How certain is Mrs. Yeung terminal and without any remediable cause(s) for her impaired swallowing? Do we know what is valued by Mrs. Yeung? What is the expectation of her daughter Karen and can she be involved as an informal carer? Does Karen have similar fear of unsafe swallowing as the aged home care worker Man Yi so much so that Karen is reluctant to hand feed her mother to avoid the guilt of causing her mother to choke to death? How can the aged home nursing supervisor and the hospital team give support to Man Yi and Karen?

4. Guidance for hospital and aged home staff presented with a similar situation

Ideally, this situation may have been prevented by collaborative discharge planning between providers/carers in the hospital and community setting. Short of this, the following tactics may be of help:

• Close liaison between the hospital out-reach community geriatric assessment team (CGAT) and the aged home staff for post-discharge patients; e.g. review of oral intake of Mrs. Yeung soon after discharge by CGAT, education of aged home staff on safe swallowing techniques and postures, a hotline accessible to aged home staff to call for help and advice by CGAT.
• Attitude of moving away from risk-centred medicine to person-centred care: Since the focus on risk-centred medicine (unsafe swallowing, aspiration risk) has created anxiety, fears and defensiveness in aged home staff and probably also the hospital team and the patient’s daughter, it may be reassuring if the speech therapist acknowledges “relative” rather than “absolute” swallowing risk, and avoids recommendation of “non-oral feeding” in documentation, which may be seen as expert opinion with litigation consequences. The speech therapist and CGAT team can teach Karen on safe hand feeding techniques, diverting the focus from aspiration to human touch, and encourage Karen to try to come to the aged home after work and hand feed her mother carefully. Karen can also consider recruiting volunteering friends and neighbours to provide careful hand feeding for her mother at the aged home.
• ACP is not a one-off but rather an ongoing process of discussion and review as the patient’s condition or preference changes. If Mrs. Yeung is distressed (e.g. due to choking) despite careful hand feeding and continues to lose weight, CGAT can discuss with her daughter on the option of short-term tube feeding and assess for any improvement and tolerability. If Mrs. Yeung’s condition improves after short-term tube feeding, careful hand feeding can be reintroduced.