Cases:MrWoo

Case: Mr Woo

Toileting Issues in End of Life Care

Mr Woo (85 years old) is a patient with late-stage liver cancer, who has only about half a year of remaining life expectancy. Before being diagnosed, Mr Woo had decent physical and psychological conditions. He could take care of himself and had never needed to be hospitalized for treatment. For this reason, Mr Woo was very proud of himself. However, his conditions have recently been deteriorating at a rapid pace, forcing him to be hospitalized immediately. Since Mr Woo does not genuinely believe that he is about to die, he wants to create a sense of “feeling alive” for himself, and he does not want the healthcare staff to treat him like a dying patient. However, it is an undeniable fact that Mr Woo’s conditions are getting worse, as he begins to experience symptoms such as dizziness and drowsiness, thereby needing to stay in bed for most of the time. Given Mr Woo’s frail conditions, the healthcare staff believes that if he is allowed to go to the toilet by himself, then the risks of falling and fainting may arise. In view of this, the nurse told Mr Woo, “Since you are currently on an IV drip, it may not be that convenient for you to go to the toilet on your own. We will help you put the diapers on.” Mr Woo nervously asked, “Diapers? Do you mean that I need to stay in bed while toileting? Don’t tell me you can’t send a staff to assist me with the toileting routines!” The nurse answered, “I am very sorry about that. Our manpower is limited. In addition, we are worried about your safety.” Mr Woo became angry and did not accept the nurse’s explanation, as he perceived the use of diapers to be a severe violation of his dignity. After a while, Mr Woo even ranted, “As the doctor said that I cannot live for much longer, why can’t you satisfy my humble wish of being able to go to the toilet on my own, even when I am approaching the end of my life? Why are you forcing me to use the diapers, even when I can walk independently and still have a call of nature, and I am not like those incontinent patients who can’t control themselves? As I am already about to die, why do you think it matters to me if I am safe or not when going to the toilet?”

In the above case, given the shortage in resources and manpower, the actions taken by the healthcare staff seemed to be reasonable, yet they indeed contradicted with Mr Woo’s preferences. So, given that Mr Woo is dying soon, how should the healthcare staff balance his interests in different aspects and thereby provide the optimal end-of-life care? What would be the considerations with respect to clinical ethics?

Questions to think about:

  • How should the healthcare staff apply the ethical principle of “respect for autonomy” in this case?
  • What is the role played by the patient’s dignity in end-of-life care?
  • Can the efficiency and safety of care provision override the patient’s subjective preferences? Why?
  • How should the person-in-charge of a ward or department strike a balance between resources allocation and satisfaction of the needs of individual patients?

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– Prof Roger Y. Chung
Co-Director, Centre for Bioethics
Associate Director, Institute for Health Equity
Associate Professor, School of Public Health and Primary Care
The Chinese University of Hong Kong

Here are some of the morally relevant features of the case:

  • Conditions:
    • Terminal cancer patient
    • Irreversible condition
    • Continually deteriorating with debilitating symptoms
    • Risk of fall if not escorted
    • With certain degree of mobility (i.e., can walk)
    • Not incontinent
  • Patient’s perspective:
    • Patient does not accept his disease’s terminal status and/or being regarded as a terminal patient
    • Using adult diapers is a matter of dignity to the patient
    • Clearly rejects the use of adult diapers
    • Seems to understand the risk of fall, and does not think that it outweighs the concern for dignity and autonomy
  • Environmental/external factors:
    • Limited human resources for caring of essential activities of daily living

In Beauchamp and Childress’s Principlism, “respect for autonomy” is a prima facie bioethical principle that is decision-specific.  In other words, it is specific to a single medical decision with regards to whether a patient accepts or rejects a treatment.  In this case, the decision is specific towards whether or not Mr Woo accepts using adult diapers to avoid the risk of fall as well as circumvent the external/environmental issue of lack of human resources.  Even though wearing adult diapers or not is not a medical decision as high-staked as approving a surgical procedure, it is nevertheless a decision that the patient has mental capacity to make.  Moreover, this intervention is a matter of dignity towards the patient.  Dignity refers to the inherent worth and value of each individual, and it certainly encompasses respect for a person’s autonomy, privacy, and avoidance of treating individuals as mere objects or means to an end.  In other words, violations of dignity can occur through actions that undermine a person’s autonomy, privacy, or treating them disrespectfully or in a dehumanizing manner.  If we put the morally salient features of the scenario on a principlist balance scale, “respect for autonomy” definitely carries weight towards not wearing the diapers. 

However, on the other side of the scale, the prima facie principles of “beneficence,” “justice,” and “non-maleficence” are also at play.  Specifically, the avoidance of harm due to fall can be interpreted as an adherence to the principle of “beneficence” in the form of positive prevention of harm.  On the other hand, the concern for inadequate human resources is a matter of “distributive justice,” which specifically concerns the inequitable distribution of resources to other patients if more resources need to be allocated to aid Mr Woo to the restroom on a regular basis.  Moreover, the administration of adult diaper would likely not inflict harm on Mr Woo, thereby adhering to the principle of “non-maleficence,” which requires healthcare provider to at least do no harm to the quality of life of the patient with any treatment/intervention.  (Note that to Beauchamp and Childress, quality of life is the criteria that matters in the principle of non-maleficence.) Nevertheless, one could still argue that while the diaper intervention may not inflict severe physical harm to the patient, it could still inflict minor physical harm (e.g. skin irritation, allergic reaction, fungal infection, etc.) if diapers are not changed on a regular basis.  Also, it could inflict psychological harm towards the patient, which is also encompassed in the common understanding of quality of life.  This psychological harm is very obvious in the case of Mr Woo, who expressed his disapproval of such intervention with anger and complaint. 

Remember that all these principles operate in prima facie manner, meaning they should be taken as equally basic principles that should be followed at their face value, but are not absolute.  In other words, in case of conflict among these principles, justifications are needed to side with one “actual obligation” (i.e., all-things-considered obligation) as your final verdict that would override the rest of the other moral considerations.  However, even having a final verdict of actual obligation does not mean that other moral considerations have to be completely silenced or canceled out; rather, going for one actual obligation would leave behind moral residues of other moral considerations, which would in turn give rise to new moral obligations. 

In this case, Mr Woo clearly rejects the use of adult diapers.  Therefore, to administer adult diapers against his will, hard paternalism will need to be imposed.  According to Beauchamp and Childress, to justify hard paternalism in healthcare, the following conditions must be satisfied:

  1. A patient is at risk of a significant, preventable harm (i.e., fall can be significant but preventable harm)
  2. The paternalistic action will probably prevent the harm (i.e., avoidance of fall is likely)
  3. The prevention of harm to the patient outweighs risks to the patient of the action taken (i.e., the prevention of fall may likely outweigh the risk of other more minor physical harm to the patient, but questionable whether it could outweigh the risk to the patient’s psychological well-being in this case, especially when the patient seems to be fine with bearing that risk of fall)
  4. There is no morally better alternative to the limitation of autonomy that occurs (i.e., in the case of limited resources, there does not seem to be alternative; however, we can always think outside the constraints of one hospital – e.g. can the patient be transferred to another hospital with more resources? Are the non-hospital caregivers allowed to aid the patient according to the hospital policy?  Does Mr Woo have someone (rather than hospital staff) who can help him with toileting?) 

Consequently, the least autonomy-restrictive alternative that can secure the benefit should be adopted.  Given that the satisfaction of Conditions 3 and 4 are rather dubious, it seems difficult to justify the practice of hard paternalism in this case – i.e., no adult diapers for Mr Woo seems to be the final verdict. 

Finally, even if the adult diapers are not administered to Mr Woo (i.e., actual obligation), it does not silence the moral concerns of avoidance of fall and distributive justice (i.e., moral residues).  They are still important moral concerns that need to be observed and addressed with other means and approaches.  I will leave this to the students for their deliberation of what can be done to address the moral residues if diapers are not going to be administered.         

Some important notes:

  • Dignity conventionally falls under the principle of respect for autonomy in Beauchamp and Childress’s bioethical framework
  • Quality of life is the criteria that matters when one talks about harm and thus the principle of non-maleficence in Beauchamp and Childress’s bioethical framework
  • Violations of dignity can certainly impact a person’s quality of life, but these two concepts are not interchangeable. Violations of dignity can occur even if there is no direct impact on an individual’s quality of life, and vice versa. 
  • Principlism offers only one, but an influential, method in balancing the different moral obligations in bioethical scenarios. Other tools can also be useful in helping us deal with ethical dilemma that we may encounter in healthcare settings (e.g. narrative ethics, care ethics).