Ethics Casebook-Backgrounds

Decisions about Feeding Tubes in Advanced Dementia

Decisions about Feeding Tubes in Advanced Dementia

– Dr. Jacqueline Yuen, Clinical Lecturer, Department of Medicine and Therapeutics, CUHK

Introduction

In Hong Kong, tube feeding in advanced dementia patients is highly prevalent, particularly amongst those living in residential care homes for the elderly (RCHEs).1,2 However, feeding tubes are most frequently placed during an acute hospitalization where decisions are made with healthcare providers who are unfamiliar with the patients.3 Clinicians commonly rely on the swallowing assessment that a patient is high aspiration risk to justify feeding tube placement. This can be problematic if the decision neglects to consider other factors that are important to the best interests of the patient. Compounding the problem is the fact that many clinicians have inaccurate expectation of benefits from tube feeding that is not supported by evidence.4-7 Given that tube feeding carries significant risks and can negatively impact a patient’s quality of life,8 healthcare providers have an important responsibility to help families make informed decisions that support their loved one’s values and best interests. This article provides a step-by-step approach to guide clinicians on the decision-making process about feeding tube placement in advanced dementia patients.

Step 1: Investigate the etiology of the feeding problem

Eating difficulties in dementia patients can be due to many causes. The first step is to thoroughly evaluate whether the underlying cause is reversible. For example, poor appetite can be due to depression, dental problems, untreated pain, dry mouth, constipation, and medication side effects. All of these can be reversed with proper treatment.9 For problems that are manifestations of dementia such as apraxia resulting in inability to use utensils or refusal to open the mouth, conservative strategies such as providing finger food, cueing, altering the environment, and stimulation with different food temperatures, textures, and flavors can be tried.8 In Hong Kong, specialized dementia feeding programs in certain public hospitals have been successful in overcoming eating difficulties in some dementia patients through conservative feeding strategies.

Step 2: Determine the patient’s overall prognosis

Healthcare providers and family often don’t recognize that dementia is a terminal illness. Average life expectancy after initial diagnosis is 4 to 9 years.10,11 Difficulty swallowing leading to recurrent aspiration pneumonia is common in patients in the advanced stage and may be a sign that the patient is near the end of life.12 Recognizing the patient’s stage in the disease trajectory is important to determine the prognosis and the likelihood of benefit from tube feeding. Prognostication tools such as the Functional Assessment Staging Tool (FAST) can help clinicians make this determination.13 Consultation with a geriatrics specialist may be helpful in some cases.

Step 3: Weigh risks and benefits of tube feeding and alternatives based on evidence

If a reversible cause cannot be identified and conservative strategies have been exhausted, clinicians should then determine how the evidence for tube feeding applies to the patient at hand. Contrary to a common misconception amongst healthcare providers that tube feeding can improve survival, this has not been shown in studies for patients with advanced dementia.14-18 This is consistent with the findings of a local study of elderly RCHE residents with advanced dementia where 1-year mortality was high at 34% and enteral feeding was a risk factor for mortality.2

In advanced dementia patients, tube feeding has not been shown to prevent aspiration pneumonia. Aspiration of oral secretions and regurgitated stomach contents can still occur.19,20 Tube feeding may even increase aspiration events since it decreases the lower esophageal sphincter pressure, making gastroesophageal reflux more common.21 Furthermore, tube feeding has not been shown to improve functional and nutritional status in advanced dementia patients.8,14,22 Tube feeding carries other significant risks include bleeding, mucosal erosion, vomiting, diarrhea, and tube blockage and dislodgement requiring repeated re-insertions.8 In Hong Kong, nasogastric tubes are more commonly used than percutaneous endoscopic gastrostomy tubes but are more uncomfortable.3 Physical restraints may be used to prevent patients from pulling out the tube. This not only worsens agitation in a demented patient, but also limits mobility leading to increased rates of pressure sores.15,23

An alternative strategy for feeding problems in advanced dementia is careful hand feeding (CHF).24 In CHF, a trained carer feeds the patient orally using feeding techniques and closely observes the patient for choking and pocketing of food. Although CHF cannot prevent aspiration events, it is no worse than tube feeding for the outcomes of aspiration pneumonia, functional status and death.22,25 CHF may be preferable when considering the patient’s quality of life. Unlike tube feeding, CHF allows patients to enjoy the pleasure of eating and socialization during meal times. Given these risks and benefits, the American Geriatrics Society recommends CHF over feeding tubes for eating difficulties in older adults with advanced dementia.26

Step 4: Individualize decision through a shared decision-making process with family

Clinicians should involve the family in shared decision-making when considering the option of tube feeding and its alternatives. The decision should prioritize any preferences of the patient if known, such as documented in an advance directive. If the patient’s preferences are not known, then the decision should be based on the patient’s best interests. Besides having a firm grasp of the clinical facts and evidence, clinicians should consider other factors including psychological, cultural, economic and institutional factors that may come into play.27

Families often experience distress when seeing a loved one without adequate nutrition, as providing nourishment is commonly seen as a way to nurture and comfort one who is ill.28 It may take time for families to accept the fact that their loved one is near the end of life and that placing a feeding tube is not going to “fix” the problem. Furthermore, families may hold certain cultural or religious beliefs that influence their perspectives. Clinicians should take on a respectful attitude when listening to their concerns, provide support, and try to find common ground when disagreements arise. A common concern raised by families in the local culture is the fear that their loved one will “starve to death.”27 Clinicians should respond empathically by acknowledging the families’ distress in seeing their loved one’s deterioration and reassure them that their loved one is not experiencing hunger at this advanced stage of illness. The patient is dying because the disease process is causing the body to shut down and not because inadequate nutrition is provided. It should be emphasized that CHF can promote comfort for their loved ones when they are near the end of life.3

It is also important to understand other team members’ and carers’ concerns in the decision process. Practical issues such as the availability of trained staff or caregivers to dedicate time for CHF in the hospital and when patients return to their place of residence are important to consider. As are potential concerns from healthcare staff about legal liability if a patient subsequently aspirates after being hand fed. Institutions need to have strong policy support for CHF and a culture that promotes end-of-life care in order for this practice to be successfully implemented.27

Step 5: Comply with institutional policies on artificial nutrition and hydration (ANH) in terminally ill patients

When the healthcare team and family jointly decide that tube feeding is not in the best interest of a patient, clinicians should follow their institutional policies on withholding tube feeding. In Hong Kong public hospitals, clinicians should refer to the Hospital Authority’s Guidelines on Life-Sustaining Treatment in the Terminally Ill.3 For patients whose death is imminent (death is expected within a few hours or days), it is acceptable to withdraw or withhold ANH without a valid advanced directive. For patients whose death is not imminent, the decision requires consensus with the family and within the healthcare team. The team must include two doctors, one of whom is a specialist in a relevant field (e.g. geriatrics or palliative care). In the case where the patient is unable to swallow and thus CHF cannot be offered as an alternative, the team must also seek advice from the cluster clinical ethics committee. Two exceptions to this requirement are 1) patients who have previously expressed a clear wish to refuse tube feeding verbally to family members or in an advanced directive and 2) patients who are actively and persistently resisting tube feeding, such as repeatedly pulling out their nasogastric tube (HA Guidelines 2015).3

Conclusion

The decision about tube feeding for advanced dementia patients should be made in accordance to the ethical principles of patient autonomy and benevolence. Still, it should be a shared decision that ensures accurate communication about the patient’s prognosis, risks and benefits of tube feeding versus alternatives, and respects the family’s and healthcare team’s perspectives. Ideally, patients diagnosed in the early stages of dementia would have a chance to express their preferences about tube feeding and other preferences for future medical care while mentally sound. The advance care planning process can continue with the family after the patient loses capacity whenever signs of disease progression appear. In this manner, families will have more time to come to terms with the expected trajectory of their loved ones’ illness and avoid the need to make decisions during a “crisis” when the patient is hospitalized. Through earlier conversations, families can also make better decisions that honor their loved ones’ wishes and provide them with dignified care at the end of life.

References

Advance Care Planning and Advance Directives in Hong Kong: Concepts and Developments

Advance Care Planning and Advance Directives in Hong Kong: Concepts and Developments

– Dr. Tse Chun Yan, Chairman, HA Clinical Ethics Committee (2005 to 2017)

Background

With contemporary development in medical technologies, many life-sustaining treatments can still be offered near the end of life. However, some of these only prolong the dying process, doing more harm than good, and are against the patient’s wishes. It is generally agreed that such futile treatments may be withheld or withdrawn in suitable situations.1 Firstly, when a competent patient decides not to receive a life-sustaining treatment (LST), the refusal must be respected. Secondly, for an incompetent patient, when the healthcare team and the family members consider that the treatment is not in the patient’s best interests, the treatment can be withheld or withdrawn. However, deciding what is in the patient’s best interests often involves not only medical considerations, but also quality of life considerations which can be value laden. If the prior preferences or values of the incompetent patient are not known, there could be difficulties for the healthcare team and family members to reach consensus.

Such difficulties could be alleviated if the patient, while competent, has made an advance decision refusing certain LSTs. The person may specify what LST one does not want under what situations (e.g. terminally ill or irreversible coma). In Hong Kong, the term Advance Directive (AD) usually refers to this. In some other countries, such advance refusal is called a “living will”, and the term AD may also include appointment of a proxy decision maker on healthcare issues. Under the common law framework in Hong Kong, according to the Law Reform Commission of Hong Kong (LRC) Report on AD in 2006,2 a valid and applicable AD refusing medical treatment has the same effect as a contemporaneous oral instruction, and must be respected. However, a proxy directive on healthcare issues currently does not have legal status in Hong Kong.

Development of guidelines on AD

ADs were seldom discussed among healthcare professionals or among the public in Hong Kong until 2004, when LRC issued a public consultation paper on ADs. In 2006, LRC released her report on the issue, recommending ADs to be promoted under the existing common law framework instead of by legislation. LRC further proposed a model AD form, the scope of which is limited to the terminally ill, irreversible coma, and persistent vegetative state. But it is not the only format of ADs that can be used under common law. In 2009, Health and Food Bureau of the Government of HKSAR issued the Introduction of the Concept of Advance Directives in Hong Kong Consultation Paper.3 In the Paper, the Government expressed no intention to advocate the public to make ADs, but suggested to provide more information to the public about the concept of an AD, and to have guidelines for professionals. Furthermore, the Paper considered whether to promote the concept of advance care planning (ACP) in Hong Kong.

In 2010, the Hospital Authority of Hong Kong (HA) issued the Guidance for HA Clinicians on Advance Directives in Adults, and revised the Guidance in 2014 and 2016.4 The HA AD form was modified from the LRC model form. In its 2010 version, the scope of the HA AD form was limited to the terminally ill, irreversible coma, and persistent vegetative state. Upon revision in 2014, a new category “other end-stage irreversible life-limiting condition” (such as end-stage renal failure, end-stage chronic obstructive pulmonary disease, and end-stage dementia, etc.) was added. According to the Guidance, the validity of an AD may be doubted if:

the AD is ambiguously drafted,
the AD was not properly signed,
there are claims or suggestions that the patient had been under undue influence at the time of making the AD,
there is reason to suspect that the patient was not competent or was not properly informed when the AD was made, or
the patient has done something that clearly goes against the advance decision which suggests that he/she has changed his/her mind.

An AD becomes applicable when the patient suffers from the pre-specified condition, and is no longer competent. A valid and applicable AD has legal status, and family members cannot override it. If there is doubt about the validity or applicability of an AD, the healthcare team should continue to provide all clinically indicated emergency LSTs, while waiting for clarification. Such treatments may be withdrawn after the validity and applicability of the AD becomes clear.

Making AD via advance care planning

The approach to the making of an AD varies among different countries. Currently in HA, ADs are usually made by patients with advanced irreversible illnesses via advance care planning (ACP). ACP is often defined as a process of communication among patients, their health care providers, their families, and important others regarding the kind of care that will be considered appropriate when the patient cannot make decisions.5 Some places adopt a broader definition and include discussions with family members of incompetent or minor patients within the scope of ACP. 6,7

In September 2015, HA updated her Guidelines on LST in the Terminally Ill, and added a new section on ACP. This section was further developed into an independent set of guidelines on ACP in 2019.8 The updated Guidelines recommend that the ACP process may be initiated in any of the following situations: following the diagnosis of a life-limiting condition with a rapid downhill course, early cognitive decline in dementia, significant disease progression, discontinuation of disease-targeted treatments, transition to palliative care, recovery from an acute severe episode of a chronic disease, following multiple hospital admissions, or when the patient becomes institutionalized. However, the approach must be individualized, and it is important to assess whether the patient is ready for such a discussion before embarking on it. The discussion should be made sensitively with good communication skills. A rigid, routinized or checklist approach is not recommended. The scope of the discussion may include anticipated progression and prognosis of the illness, treatment options available and the benefits and risks, the patient’s preferences and values regarding medical and personal care, and views and concerns of family members. Outcomes of ACP may include decisions on preferences for future medical or personal care, making an AD, and assigning a family member for future consultation when the patient becomes incapacitated.

Respecting an AD in an emergency situation

Before deciding to respect an AD, a doctor has to judge whether the AD is valid and applicable. This is not easy in an emergency situation, especially if there is an out-of-hospital cardiac arrest, which requires an immediate decision. To overcome this difficulty, many states in the USA developed the “Physician Orders for LST” (POLST) system.9 In the UK, guidelines and procedures have been developed to enable compliance to a Do-Not-Attempt Cardiopulmonary Resuscitation (DNACPR) form by other health care providers, including ambulance staff.10 In Hong Kong, the HA DNACPR form for non-hospitalized patients promulgated in 2014 is along this direction.11 Unfortunately, the approach is not yet accepted by the ambulance crew, because of the concern over the “duty to resuscitate” in the Fire Services Ordinance.

Legislation for AD

While the HA guidelines may facilitate the use of ADs and ACP in the Hospital Authority, there have been questions raised by professionals and members of the public regarding ADs and ACP. One of the concerns is the lack of legislation on ADs in Hong Kong. Although the Law Reform Commission report of 2006 expressed that, under the common law framework, a valid and applicable AD refusing medical treatment must be respected, there could be grey areas. Under Section 59ZF of the Hong Kong Mental Health Ordinance Cap 136, a doctor may provide life-sustaining treatments to an incompetent patient without consent if this is in the best interests of the patient. The relationship with an advance refusal of treatment is not mentioned in the legislation. Some may argue that, based on the patient’s best interests, a doctor can override his/her AD. Although, in the great majority of cases, the patient’s advance refusal and the patient’s best interests are in line, it will be useful to have legislation to clarify the relationship between this section of the Ordinance and an AD, to avoid controversies in difficult cases.

Healthy members of the public making an AD

The approach towards promotion of ADs among healthy members of the public differs among different countries, ranging from wide promotion in the USA,12 to a more judicious approach in the UK. Some consider that there could be problems in indiscriminate signing of ADs among healthy members of the public. There is not much controversy in making an advance directive for the condition of permanent severe neurological injury. Such injury may result from unexpected catastrophic events, for example massive stroke or trauma. Because the poor quality of life of permanent severe neurological injury per se is the same regardless of the underlying cause of the condition, the decision is more straightforward. However, an advance decision regarding future terminal illness can be problematic in several ways.13 Firstly, to properly cover a range of possible scenarios that can lead to a terminal illness in the future, the information needed may be overwhelming and distressing. 14 Secondly, the quality of life of different illnesses in the terminal phase can be quite different, and it may not be appropriate to make a broad brush decision without knowing what will be faced. Thirdly, a healthy person’s perception of hypothetical illness states may be worse than the perception of a chronically ill patient,15,16 and the acceptability of treatments resulting in certain diminished states of health may increase with time.17 This implies that a person’s preference for treatment may change when the person becomes ill.

Actually, when a serious illness is diagnosed, most patients still have the capacity to make appropriate decisions. It may be more useful for healthy members of the public to prepare themselves and their families for contemporaneous decisions that arise during future illness, rather than make premature advance decisions about LSTs.18,19 To get better prepared for such decisions, it is important for healthy members of the public to learn more about the dying process, and to understand the meaning of LSTs and ADs. While they may not necessarily sign an AD before the onset of a serious illness, elderly members of the public should be encouraged to discuss with their family about preparation for death, and to express personal values and preferences about end of life care. This requires concerted efforts in public education by healthcare providers, social agencies and the Government of Hong Kong. If an elderly but relatively healthy member of the public prefers to sign an AD, the AD can be limited to the goals of care in the event of permanent severe neurological injury. When the person develops a serious illness, the AD can then be extended to other relevant scenarios.

What should be done to reduce difficulties in end-of-life decisions in Hong Kong?

While the Hospital Authority should continue to promote ADs in patients with advanced incurable illnesses as part of ACP, more work needs to be done in other aspects. There should be more education among healthcare professionals about ACP/ADs to improve their knowledge and communication skills required to handle such issues. For the general public, more death education should be promoted, so that people can have appropriate knowledge and emotional preparedness to face their own illnesses, as well as illnesses of family members and friends that may be expected or unexpected.

To improve the quality of dying, we should look beyond ACP/ADs. The overall medical care and social support for end-of-life patients should be improved, without which there could be difficulties to achieve some of the expressed preferences and wishes of the patient, e.g. good symptom control, preferred place of death etc. The improvement should not be limited to specialist palliative care, but should also include all services that have a role in looking after dying patients. To make this happen, there is a need for a government policy on end-of-life care, revising/enacting relevant legislations as necessary.

After all, death is the common destiny of all human beings. It will be good if we can have some say about how to travel through this last journey of our life peacefully, and leave a fond memory among those we treasure in our lives.

References

Moral Distress among Health Professionals: What and Why

Moral Distress among Health Professionals: What and Why

– Dr. Helen Chan, Associate Professor (by courtesy), CUHK Jockey Club Institute of Ageing, CUHK

What is moral distress?

Moral distress is defined as the negative experience among health professionals when they know the right thing to do but cannot pursue that course of action due to institutional constraint.^1-2 It is different from work stress and compassion fatigue although these may be experienced simultaneously.^3-4 The negative emotions that resulted from the initial moral distress would persist as a lingering feeling of unease and accumulate over time.² The unresolved moral distress can result in health professionals being desensitized to ethical challenges.⁴

Prevalence and sources of moral distress

The concept of moral distress originated from nursing research, but empirical evidence consistently showed that moral distress is experienced by various types of health professionals, including physicians, pharmacists, social workers, and other allied health professionals.^6-7 Studies also found that moral distress is reported across different specialties, such as critical care, surgical care, oncology care and paediatric care, and healthcare settings, including acute care, critical care and long-term care.^3-7 There is growing awareness that moral distress is also common in medical students, residents and junior staff.^8-9

The major sources of moral distress are providing futile care or care which is not in patients’ best interests and witnessing poor quality of care. Other reasons for moral distress are inadequate staffing, working with incompetent co-workers, inappropriate use of healthcare resources, fragmentation of care and poor teamwork.^6-10 In 2016, a local survey was conducted to examine the extent of moral distress experienced by nurses in the acute hospital setting in Hong Kong.¹¹ The level of moral distress was measured using Moral Distress Scale-Revised (MDS-R) which is a validated questionnaire with 21 statements describing different ethically challenging situations.⁵

As shown in Table 1, most of the items with the highest scores were related to end-of-life care. It seems that moral distress arises when nurses perceived a gap between the provision of quality end-of-life care and the care that patients received in practice. Moreover, the findings showed that the level of moral distress of nurses working in various specialties or department, including oncology, surgical and emergency care, were comparable to those in critical care units. Perhaps the increased prevalence of chronic progressive diseases and the ageing population prompt the need to place a greater emphasis on end-of-life care across different units

Table 1. Top five Moral Distress Scale-Revised (MDS-R) items* (N=447).

Five MDS-R items with the highest frequency score	Mean ± SD
Follow the family’s wishes to continue life support even though I believe it is not in the best interest of the patient.	5.61 ± 4.00
Carry out the physician’s orders for what I consider to be unnecessary tests and treatments.	5.19 ± 4.05
Initiate extensive life-saving actions when I think they only prolong death.	5.14 ± 3.88
Continue to participate in care for a hopelessly ill person who is being sustained on a ventilator, when no one will make a decision to withdraw support.	4.39 ± 3.87
Work with nurses or other healthcare providers who are not as competent as the patient care requires.	4.20 ± 3.65

*Respondents were asked how often they encountered these situations in their care practice (frequency) and the level of disturbance they experienced in these situations (intensity) using a 5-point Likert scale respectively. The frequency scale ranged from 0 (never) to 4 (very frequently), whereas the intensity scale from 0 (none) to 4 (great extent). The frequency score and the intensity score are multiplied for each item.

Impacts of moral distress

Clearly, moral distress is an issue highly pertinent to the cost, quality and sustainability of healthcare services. Moral distress may manifest itself as anger, impatience and depression due to emotional exhaustion, frustration, guilt, shame, powerlessness, or distancing from clients and being silent and indifferent towards patients’ care.^6-7

On the other hand, moral distress can also affect the wellbeing of health professionals, causing somatic symptoms such as palpitations, insomnia, nausea, fatigue, headaches, tearfulness and gastrointestinal upset.⁷ Evidence suggests that moral distress is significantly associated with burnout in critical care providers. The physical and psychological sequelae intertwine, resulting in poor job satisfaction, low workplace morale, and absenteeism.⁶ Some studies found that moral distress is associated with poor staff retention, since health professionals may perceive themselves as moral agents who fail to fulfil their moral obligations, resulting in compromised professional integrity.⁸

Could we address moral distress?

Moral distress may be a communal experience to be interpreted in a broader context, rather than just as an individual experience. Institutional constraint is widely recognized as a contributing factor to moral distress. The implicit and explicit values of the organization affect the attitudes and behaviours of the health care providers in the clinical environment.^{6, 12-14} Recent literature noted that the socio-political healthcare context driven by government fiscal plan and policies that affect its structure and resources also play a role in shaping the ethical climate of healthcare organizations.^{3, 15}

To mitigate moral distress, relevant interventions should be built into the systems and organizations with the goal of cultivating moral resilience among health professionals so that they could recognize the experience of moral distress and have the internal capacities to uphold their moral obligations.^11-16 Following are some suggested ways for addressing moral distress:

Ethics education

The concept of moral distress should be introduced in both the pre-registration training curriculum for health professionals and continuing professional education in order to foster self-awareness towards moral distress. Monrouxe et al. (2017) underscore the importance of developing students’ moral decision-making skills when confronting with ethical dilemmas. Small clinician-led interactive sessions would enable them to understand the ethical complexities and develop confidence and skills in managing the situations.⁹ However, moral distress cannot be reduced simply through developing ethical competence. Health professionals with a heightened awareness of good healthcare are more susceptible to moral distress when they fail to act on the right course of action. Berger (2014) suggested that training on mediation and communication is also important for health professionals to improve their conflict management skills as well as patient-clinicians relationships.⁸

Organizational support

A wide range of interventions can be offered by the organization as structural empowerment so as to support health professionals in addressing moral distress. For example, multidisciplinary forums to encourage open discussion about ethical issues and operational constraints that have arisen in clinical care, mentoring for junior staff who may experience dissonance between what they have learnt and what they actually encounter in the clinical setting, regular structured debriefing sessions for ethically challenging situations in individual departments or units, and counselling services.^{3, 8, 15-17} Through open dialogue in these avenues, health professionals are encouraged to speak up, identify the contributing factors to moral distress and develop appropriate strategies in a collaborative approach. All these interventions indeed are supporting health professionals to co-create a culture of ethical practice. In addition to the aforementioned organizational measures, clinical ethics committees serve as a main resource for clinicians to seek for advice. The role of clinical ethics committees have emerged from formulating ethical guidelines to providing ethics consultation in various formats to support clinicians in clarifying their ethical concerns and moral obligations.^18-19

Conclusion

Moral distress is a common phenomenon in day-to-day clinical practice across health care settings. It jeopardizes not only the wellbeing of health professionals, but also the quality and sustainability of health care services. Ethics education is imperative to deepen the moral sensitivity of health professionals. More importantly, the reciprocal influence between the ethical climate of the health care environment and health professionals underscores that there should be proactive interventions or changes in parallel at the organization level to construct a supportive culture for ethical practice.

References

Jockey Club End-of-Life Community Care Project JCECC Capacity Building and Education Programmes on End-of-Life Care

Jockey Club End-of-Life Community Care Project
JCECC Capacity Building and Education Programmes on End-of-Life Care