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JCECC Capacity Building and Education Programmes on End-of-Life Care
Casebook on Ethical Decision-Making in End-of-Life Care
of Older Adults..
Decisions about feeding tubes in advanced dementia
-by 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
- Luk JK, Chan FH, Pau MM, Yu C. Outreach geriatrics service to private old age homes in Hong Kong West Cluster. J Hong Kong Geriatr Soc 2002;11:5-11.
- Luk JK, Chan WK, Ng WC, et al. Mortality and health services utilization among older people with advanced cognitive impairment living in residential care homes. Hong Kong Med J 2013;19:518-24.
- HA guidelines on life-sustaining treatment in the terminally ill 2015. Hong Kong: Hospital Authority; 2015.
- Shega JW, Hougham GW, Stocking CB, Cox-Hayley D, Sachs GA. Barriers to limiting the practice of feeding tube placement in advanced dementia. J Palliat Med 2003;6:885-
- Carey TS, Hanson LC, Garrett JM et al. Expectations and outcomes of gastric feeding tubes. Am J Med 2006;119:527.
- Hanson LC, Garrett JM, Lewis C et al. Physicians’ expectations of benefit from tube feeding. J Palliat Med 2008;11:1130–1134.
- Brett AS, Rosenberg JC. The adequacy of informed consent for placement of gastrostomy tubes. Arch Intern Med 2001;161:745–748.
- Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999;282:1365-70.
- Roberson RG and Montagnini M. Geriatric failure to thrive. American Family Physician 2004;70:343-350.
- Larson EB, Shadlen MF, Wang L et al. Survival after initial diagnosis of Alzheimer disease. Ann Intern Med 2004;140:501–509.
- Boustani M, Peterson CB, Hanson LC et al. Screening for dementia syndrome: A review of the evidence. Ann Intern Med, 2003;138:927–937.
- Mitchell SL, Teno JM, Kiely DK et al. The clinical course of advanced dementia. N Eng J Med 2009;361:1529-1538.
- The National Hospice Organization. Medical guidelines for determining prognosis in selected non-cancer diseases. Hosp J 1996;11:47-63.
- Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev 2009:CD007209.
- Kuo S, Rhodes RL, Mitchell SL et al. Natural history of feeding-tube use in nursing home residents with advanced dementia. J Am Med Dir Assoc 2009;10:264–270.
- Meier DE, Ahronheim JC, Morris J et al. High short-term mortality in hospitalized patients with advanced dementia: A lack of benefit of tube feeding. Arch Intern Med 2001;161:594–599.
- Sanders DS, Carter MJ, D’Silva J et al. Survival analysis in percutaneous endoscopic gastrostomy feeding: A worse outcome in patients with dementia. Am J Gastroenterol 2000;95:1472–1475.
- Teno JM, Gozalo PL, Mitchell SL et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc 2012;60:1918–1921.
- Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet 1996;348:1421–1424.
- Vergis EN, Brennen C, Wagener M, Muder RR. Pneumonia in long-term care: a prospective case-control study of risk factors and impact on survival. Arch Intern Med 2001;161:2378-81.
- Gomes GF, Pisani JC, Macedo ED, Campos AC. The nasogastric feeding tube as a risk factor for aspiration and aspiration pneumonia. Curr Opin Clin Nutr Metab Care 2003;6:327-33.
- Garrow D, Pride P, Moran W et al. Feeding alternatives in patients with dementia: examining the evidence. Clin Gastroentol Hepatol 2007;5:1372-1378.
- Teno JM, Mitchell SL, Kuo SK, et al. Decision-making and outcome of feeding tube insertion: a five-state study. J Am Geriatr Soc 2011;59:881-6.
- Hanson LC, Ersek M, Gilliam R et al. Oral feeding options for people with dementia: A systematic review. J Am Geriatr Soc 2011;59:463–472.
- Hanson LC. 2013. Tube feeding versus assisted oral feeding for persons with dementia: using evidence to support decision-making. Ann Long Term Care 21(1):36-39.
- American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc 2014;62:1590-3.
- Luk JK, Chan FH, Hui E et al. The feeding paradox in advanced dementia: a local perspective. Hong Kong Med J 2017;23:306-310.
- Lopez RP, Amella EJ. Time travel: The lived experience of providing feeding assistance to a family member with dementia. Res Gerontol Nurs 2011;4:127–134.
Capacity Building and Education Programmes on End-of-Life Care (2)
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Casebook on Ethical Decision-Making in End-of-Life Care
of Older Adults
Decisions about feeding tubes in advanced dementia
-by 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 guide families to make informed decisions that support their loved one’s values and best interests. This article provides a step-by-step approach to inform 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 some 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 offering 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 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 for end of life patients 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 may also make better decisions that honor their loved ones’ wishes and provide them with dignified care at the end of life.
References
- Luk JK, Chan FH, Pau MM, Yu C. Outreach geriatrics service to private old age homes in Hong Kong West Cluster. J Hong Kong Geriatr Soc 2002;11:5-11.
- Luk JK, Chan WK, Ng WC, et al. Mortality and health services utilization among older people with advanced cognitive impairment living in residential care homes. Hong Kong Med J 2013;19:518-24.
- HA guidelines on life-sustaining treatment in the terminally ill 2015. Hong Kong: Hospital Authority; 2015.
- Shega JW, Hougham GW, Stocking CB, Cox-Hayley D, Sachs GA. Barriers to limiting the practice of feeding tube placement in advanced dementia. J Palliat Med 2003;6:885-
- Carey TS, Hanson LC, Garrett JM et al. Expectations and outcomes of gastric feeding tubes. Am J Med 2006;119:527.
- Hanson LC, Garrett JM, Lewis C et al. Physicians’ expectations of benefit from tube feeding. J Palliat Med 2008;11:1130–1134.
- Brett AS, Rosenberg JC. The adequacy of informed consent for placement of gastrostomy tubes. Arch Intern Med 2001;161:745–748.
- Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999;282:1365-70.
- Roberson RG and Montagnini M. Geriatric failure to thrive. American Family Physician 2004;70:343-350.
- Larson EB, Shadlen MF, Wang L et al. Survival after initial diagnosis of Alzheimer disease. Ann Intern Med 2004;140:501–509.
- Boustani M, Peterson CB, Hanson LC et al. Screening for dementia syndrome: A review of the evidence. Ann Intern Med, 2003;138:927–937.
- Mitchell SL, Teno JM, Kiely DK et al. The clinical course of advanced dementia. N Eng J Med 2009;361:1529-1538.
- The National Hospice Organization. Medical guidelines for determining prognosis in selected non-cancer diseases. Hosp J 1996;11:47-63.
- Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database Syst Rev 2009:CD007209.
- Kuo S, Rhodes RL, Mitchell SL et al. Natural history of feeding-tube use in nursing home residents with advanced dementia. J Am Med Dir Assoc 2009;10:264–270.
- Meier DE, Ahronheim JC, Morris J et al. High short-term mortality in hospitalized patients with advanced dementia: A lack of benefit of tube feeding. Arch Intern Med 2001;161:594–599.
- Sanders DS, Carter MJ, D’Silva J et al. Survival analysis in percutaneous endoscopic gastrostomy feeding: A worse outcome in patients with dementia. Am J Gastroenterol 2000;95:1472–1475.
- Teno JM, Gozalo PL, Mitchell SL et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc 2012;60:1918–1921.
- Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet 1996;348:1421–1424.
- Vergis EN, Brennen C, Wagener M, Muder RR. Pneumonia in long-term care: a prospective case-control study of risk factors and impact on survival. Arch Intern Med 2001;161:2378-81.
- Gomes GF, Pisani JC, Macedo ED, Campos AC. The nasogastric feeding tube as a risk factor for aspiration and aspiration pneumonia. Curr Opin Clin Nutr Metab Care 2003;6:327-33.
- Garrow D, Pride P, Moran W et al. Feeding alternatives in patients with dementia: examining the evidence. Clin Gastroentol Hepatol 2007;5:1372-1378.
- Teno JM, Mitchell SL, Kuo SK, et al. Decision-making and outcome of feeding tube insertion: a five-state study. J Am Geriatr Soc 2011;59:881-6.
- Hanson LC, Ersek M, Gilliam R et al. Oral feeding options for people with dementia: A systematic review. J Am Geriatr Soc 2011;59:463–472.
- Hanson LC. 2013. Tube feeding versus assisted oral feeding for persons with dementia: using evidence to support decision-making. Ann Long Term Care 21(1):36-39.
- American Geriatrics Society Ethics Committee and Clinical Practice and Models of Care Committee. American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc 2014;62:1590-3.
- Luk JK, Chan FH, Hui E et al. The feeding paradox in advanced dementia: a local perspective. Hong Kong Med J 2017;23:306-310.
- Lopez RP, Amella EJ. Time travel: The lived experience of providing feeding assistance to a family member with dementia. Res Gerontol Nurs 2011;4:127–134.
Case: Mrs Wong
ICU triage for patient with advanced cancer
Mrs. Wong is a 65-year-old retired teacher. She lives with her husband and they have no children. She is an active person who enjoys going on hikes with her husband. About two months ago, Mrs. Wong presented to the hospital with respiratory failure and was emergently intubated and admitted to the ICU. She was found to have tracheal and right bronchial obstruction by a mediastinal mass. The cardiothoracic surgical (CTS) team placed a tracheal stent and performed a mediastinoscopy with mediastinal lymph node biopsy. Although her respiratory status initially improved after stenting, her course was complicated by stent migration causing lung collapse. The CTS team brought her back to the OT and the stent was successfully replaced. Still, for a couple of weeks, her condition remained difficult to manage as she developed ventilator-associated pneumonia and had frequent episodes of desaturation due to mucous plugging.
Eventually, her condition improved and she was successfully weaned from the ventilator. That day, the biopsy results came back. Unfortunately, it confirmed advanced stage of an undifferentiated carcinoma with evidence of left adrenal metastasis on CT scan. An oncologist was consulted about treatment options and indicated that the patient is not a candidate for chemotherapy or radiation due to her tenuous respiratory status.
Dr. Tong, the ICU physician taking care of Mrs. Wong, broke the news with the patient and her husband. He explained the overall poor prognosis and the high likelihood that the respiratory failure could recur as this cancer is unresectable. This was shocking news to Mrs. Wong and her husband. Nevertheless, they were able to accept this news.
Furthermore, to plan for future medical decisions that may arise, Dr. Tong explained that if Mrs. Wong’s cancer causes blockage of her airway again leading to respiratory failure, she will likely require intubation but the chance that she will be able come off the ventilator would be very low. Given that the harm would likely outweigh the benefits of this treatment, Dr. Tong made the recommendation that the patient not be re-intubated again in the future.
Hearing this, Mrs. Wong nods in agreement. “I would not want to be hooked up to a breathing machine again if I cannot come off. This is not the state that I want to be at the end of my life,” she said with her husband sitting beside her and holding her hand.
A couple days after this conversation, Mrs. Wong was transferred to the medical ward to continue her antibiotics course. A week later, she suddenly developed respiratory distress and then had a cardiac arrest. She was resuscitated in less than one minute with return of spontaneous circulation and breathing but remained unconscious. The CTS team performed a bronchoscopy and found that her respiratory failure was due to stent migration of a poorly-fitted stent. They had purchased a tailor-made stent for her and planned to take her to the OT for stent replacement. Meanwhile, the CTS team requested that the patient be admitted to the ICU since the patient needed to be intubated for the procedure and will likely need ventilator care afterwards.
The case medical officer consulted Dr. Tong on the question of ICU admission. He conveyed that the husband is sobbing at the patient’s bedside and is pleading with the doctors to “do everything to save my wife.” When considering this question, Dr. Tong thought of the following. Although he and the patient had previously agreed on the plan for no re-intubation, Dr. Tong felt that plan was made without knowledge of the availability of a new stent. According to the CTS team, the stent replacement, if successful, may possibly allow the patient to come off the ventilator again and live for several weeks or perhaps a couple of months.
On the other hand, Dr. Tong also knew that the stent replacement does not guarantee that the patient can come off the ventilator. Even if she does, it is only a temporary measure. The underlying cancer is not reversible. Furthermore, there are only a couple of remaining ICU beds in the hospital. If he admitted Mrs. Wong to a bed, it may leave another critically ill patient with a better prognosis after ICU care without a bed when needed. Dr. Tong was unsure whether or not to admit Mrs. Wong to the ICU.
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Themes: ICU triage, advance care planning, goals of care, life-sustaining treatment
- Dr. Derrick Au Kit Sing, Director, CUHK Centre for Bioethics
We often think of ethical decision-making as making the ‘right’ decision but in real bedside scenarios there will be dilemmas where it is unclear if a single ‘right’ decision exists. The decision would have been straightforward in this case if the intervention were clearly medically futile. In this case, even though the underlying malignant condition is beyond active interventions, the CTS team considered that the tailor-made stent replacement “may possibly allow the patient to come off the ventilator” and the patient may live for several weeks or a couple of months if successfully weaned. Note that the patient had been through this once – with a stent (not tailor-made) successfully placed before, she was successfully weaned from the ventilator after a couple of weeks.
The decision would also have been straightforward had the patient expressed that she would never wish to be intubated again after that experience. But in this case, what she said was that she would not want to be hooked up to the machine at the end of her life. This left us with significant uncertainty: Did she mean “refusing intubation till the very end”, or did she mean that at this end stage of her life, with a few weeks or a couple of months to go, she already wished no more intubation – even if there was hope of extubation?
One may say that it is impossible to foresee and exhaust all possible scenarios to obtain the patient’s advance instructions. That is why advance care planning should not be limited to treatment preferences for particular situations. When time and circumstances permit, it should also seek to clarify the rationale behind the patient’s decisions. If the patient’s values and views (particularly on burdensome treatments) can be understood, it will be helpful in handling unforeseen scenarios.
The husband sobbingly pleaded to ‘do everything to save my wife’. He was unlikely to literally mean ‘doing everything’ – for instance, would he wish her to undergo aggressive chemotherapy beyond this critical stage? It may be appropriate at this juncture to emotionally support him and then invite him to consider: “What do you think she would have wanted if she were able to express her wish at this juncture?”
The underlying concept here is “substituted judgement”. A loved one, often a family member, is asked to make a difficult decision regarding withholding a life-sustaining treatment. A distinction needs to be made – though sometimes difficult – between what the patient would have wanted and what the loved one wishes. The patient’s voice should take priority over the loved one’s own view. In this case it is not clear if such distinction has been made.
There is an underlying issue of scarcity of ICU beds. Any patient admitted to ICU and occupying an ICU bed for a prolonged period may potentially affect the chance of admission for a subsequent patient. Admission criteria to ICU are often based on severity, prognosis, and reversibility of the critical condition. When two patients present at the same moment competing for the only remaining bed, it may be reasonable to consider their relative likelihood to benefit. In this case there are still a few beds vacant and it can be problematic to exclude a patient solely based on the worry that a future patient may lose out.
From the point-of-view of the ICU team, a pragmatic approach is tempting – based on experience of how soon the few remaining vacant beds will last, and whether this patient is likely to occupy a bed for a prolonged period, the team may consider this patient to have “low net benefit” compared to another prospective patient. But the point in this case is that it is not clear if the tailor-made stent procedure has “low net benefit”. It would be helpful for the ICU team to seek more clarification from the CTS team on the specific point that the stent “may possibly allow the patient to come off the ventilator”. It makes some difference if that possibility is remote – in which case it will be more like a medically futile intervention. If there is a good chance that the stent will serve the useful purpose, the decision of this last round of intervention may be better justified.
Case: Mr Chan
Feeding tube decision in a dying demented patient
Topic: Feeding tube decision in a dying demented patient
Case commentary by: Dr. Tse Chun Yan
Introduction: This video aims to discuss about the important factors that should be considered in analyzing the clinical ethics case - feeding tube decision in a dying demented patient.
00:12 Case description
08:47 Case commentary
08:53 Cultural factors should be considered and respected in clinical ethics case analysis.
09:35 Was tube feeding going to prolong the patient's life at this stage?
10:00 Was it the patient’s wish to die with a full stomach?
10:26 Was the treatment in the patient's best interests?
10:54 Case commentary wrap up
Mr. Chan was an 84-year-old male, with a history of hypertension, diabetes and recurrent ischaemic stroke. His wife died a few years ago. He had two sons and one daughter living in Hong Kong. He was diagnosed to have vascular dementia five years ago and became chair-bound. For two years, he lived with his second son's family, cared for primarily by his daughter-in-law Mary. However, Mr. Chan had gotten progressively weaker in the last few months and Mary no longer could transfer him out of bed alone. Mr. Chan was then brought to live at a private old aged home.
In the last year, he became bed bound and double incontinent and required assisted feeding. He also had recurrent hospital admissions due to chest infections and the speech therapist recommended puree diet and thickener in fluid. After an episode of aspiration pneumonia, the speech therapist suggested non-oral feeding due severe oropharyngeal dysphagia.
The doctor asked to meet with the family and the second son and the daughter came. His son said, "Father would not want to have a feeding tube placed. He had seen many tube-fed elderly people at the old age home. They just lied in bed all day and it was not a life that he wanted. He told us that he would rather die than have one put into him."
The daughter had also heard her father express that and they both made the decision for careful hand feeding rather than tube feeding. They understood the risk of aspiration, pneumonia and death.
The patient tolerated careful hand feeding for several months. However, he then developed fever and became unarousable. He was transferred to the hospital and was found to have a severe pneumonia. He was kept nil by mouth and given parenteral antibiotics. His second son and daughter were informed of deteriorating clinical condition and imminent death. They understood and agreed to continue conservative management.
The next day, however, the oldest son turned up and insisted on starting tube feeding. He accepted that his father was dying and agreed to continue comfort care and continue DNACPR order. However, he said "It's important that my father would die with a full stomach. I do not want him to become a hungry ghost.” The clinician was not sure whether he should simply reject the son's request or not.
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Themes: Nutrition and hydration, cultural beliefs, family conflict, dementia, life-sustaining treatment
- Dr. Tse Chun Yan, Chairman, HA Clinical Ethics Committee (2005 to 2017)i
Cultural factors are among various important contextual features that should be considered in clinical ethics case analysis. The Chinese may have some deep-rooted views about death and dying that the patient may value. Such views may have to be respected in suitable situations. However, this does not mean that traditional cultural views should be accepted without question. Cultural considerations have to be individualized and carefully weighed against other important considerations.
We can approach the problem step by step:
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After reaching the conclusion that tube feeding should not be provided, the doctor had to handle the son's request in an appropriate manner. Rather than just telling the patient's son that he had no right to request the treatment, it would be better for the patient's son to understand the rationale of the final decision. This would help to reduce conflicts and reduce guilt feelings in the son after the patient's death. The doctor should explain to the son that treatment given had to be in the patient's best interests, and that tube feeding would do more harm than good to the patient and was not in line with the wish of the patient. It would be useful to involve the other family members in the discussion, who might understand better the view of the healthcare team. If differences in opinion persisted despite thorough communication, the healthcare team was not obliged to provide clearly futile treatment not in the best interests of the patient. Adequate documentation of the rationale for the final decision should be made in the medical notes.
i The case and commentary was adapted from an article by Dr. Tse Chun Yan, "Practical Approach to Clinical Ethics at the Bedside for General Physicians", published in Synapse, Newsletter of the Hong Kong College of Physicians, in August 2016. The case was originally presented by Dr. Wong Che Keung of Ruttonjee and Tang Shiu Kin Hospital on 23 April 2016 in the Clinical Ethics Day held in HA Head Office Lecture Theatre.
