Jockey Club End-of-Life Community Care Project
JCECC Capacity Building and Education Programmes on End-of-Life Care
Case: Mrs Tsang
Filial piety in end of life care decisions
Mrs. Tsang is a 90-year-old woman with a history of myocardial infarction, atrial fibrillation, and congestive heart failure. Since her husband passed away eight years ago, she has been living in a residential care home for the elderly. She looks forward to regular visits from her daughter, Ga Yan, who always brings her favorite paper-wrapped cakes from her old neighborhood bakery. However, she misses most her elder son, Ga Kit, who lives in Canada with his family and returns to Hong Kong about once a year.
In the past year, Mrs. Tsang has required repeated hospitalizations every few months for exacerbations of her heart failure. Each time when the symptoms come on, she experiences swelling in her legs and could barely catch her breath when she takes a few steps or lies in bed. In the hospital, she is treated with IV diuretics that remove fluid from her body and her breathing improves. After each hospitalization, however, she returns to the aged home more debilitated. After her last discharge, she can barely stand on her feet before she feels that her legs give out beneath her.
Ivy, the nurse from the community geriatric assessment team, makes a visit with Mrs. Tsang at the aged home two weeks after her last hospitalization. Noting Mrs. Tsang’s progressive decline and weight loss over the past several months, she decides to arrange a meeting with the Mrs. Tsang, who is of sound mind, and Ga Yan to discuss advance care planning.
At the meeting, Ivy expressed her concern about Mrs. Tsang’s declining health and asked what Mrs. Tsang hopes for in her care going forward. Mrs. Tsang replied, “I know that my health is not good. I just wish that I don’t need to keep going back to the hospital. The staff is always too busy to be able to pay you much attention.” Ga Yan nods her head in agreement. “Mother’s been through a lot lately with so many hospitalizations. She really dislikes being in the hospital.”
Ivy then explains the end-of-life care (EOL) service that is provided by her hospital, which can help support Mrs. Tsang by avoiding hospitalizations if possible and focusing on her comfort.
“We will assess you regularly for any symptoms and try to treat you in the aged home if possible. If a hospitalization is needed, we will try to arrange a direct admission to the geriatric ward in the hospital and avoid a trip to the A&E department. The only requirement for patients enrolled in this programme is that they would need to agree to not for resuscitation. In other words, in the event the heart stops, the patients would forgo any attempts by the medical team at restarting the heart.”
Mrs. Tsang was alarmed. “I would still want the doctors to try to restart my heart if it stops!”
Hearing her mother’s words, Ga Yan sighs. “This programme sounds great in many respects, except that my mother’s not ready to give up yet. I’m afraid my mother will not be a good fit for your programme.”
Ivy made some notes in her records, and did not bring up the EOL service again.
Some months later, Mrs. Tsang was found to be unarousable by the carer in the home and was immediately brought by ambulance to the hospital. In the A&E, the doctors found her oxygen level and blood pressure to be low. Concerned that she is in respiratory failure and in shock, they immediately placed Mrs. Tsang on a noninvasive ventilation mask. Her oxygen level came back up after this treatment and when her condition appears more stabilized, she was admitted to the medical ward. Then the nurse on the ward calls Ga Yan and told her to come to the hospital immediately.
When Ga Yan arrived on the ward, she was greeted by Dr. Leung, the medical officer in charge of Mrs. Tsang’s care. He explains, “I’m worried that your mother’s condition may become unstable at any time. Given her serious heart condition and overall poor health, I think that in the event that her heart were to stop, I do not think that doing CPR would be in her best interest.”
Ga Yan replied, “A nurse had discussed this with my mother a few months ago at the home and my mother still wanted the doctors to try to restart her heart if it stops! Those were her exact words. I’m not sure what to do, doctor! Let me first speak with my brother!”
Dr. Leung nods. “Sure, please go ahead. You can inform the nurse after you’ve made your decision and you can ask to speak with me at any time. It’s best that a decision can be made today, as things can change quickly.”
Ga Yan immediately phones Ga Kit in Canada, which is now close to 3am. Fortunately, the phone was answered. Ga Yan explained the situation and asked her brother what he thought.
“It’s no question,” said Ga Kit. “Even though I wasn’t part of the conversation that you and mother had with the nurse, still it was mother herself who said she wanted to be resuscitated. How can we as her children go against her wish! Besides, if there is a way to allow mother to live a longer life, it would go against filial piety (不孝) to not support that. In the morning, I’m going to take the first flight out to Hong Kong. Watch over mother until I get there!”
Hearing her brother’s words, Ga Yan feels more conflicted. Her brother had not seen their mother in months. He doesn’t know how much their mother has suffered. She also doesn’t know whether her mother really understands what CPR would mean for someone in her condition at the time the nurse at the aged home brought it up. She certainly could not have imagined how sick she would be when this decision would need to be acted upon.
On the other hand, she wishes that her mother would be comfortable and have dignity when she is at the end of her life and is inclined to go along with Dr. Leung’s recommendation for not attempting CPR. However, she does not want to go against her brother’s viewpoint, and what her mother had stated in the past.
—————————————————————————————————————
– Dr. Derrick Au Kit Sing, Director, CUHK Centre for Bioethics
The daughter of Mrs. Tsang, Ga Yan, is in a difficult situation. Mrs. Tsang is unconscious, the case doctor advises that, given her serious heart condition and overall poor health, doing CPR would not be in her best interest. She is asked to inform the doctor of a decision within the day, as her mother’s condition is not stable. In previous encounter with the nurse from community geriatric assessment team, her mother apparently expressed a wish to live on even if resuscitation was required, but Ga Yan is not sure if in that brief dialogue her mother really understood what CPR would mean. She herself wishes that her mother could go through the end of life phase in comfort and with dignity. Her brother in Canada considers that it would go against filial piety (不孝) to not support their mother’s apparent wish to live on.
This case illustrates that difficult end of life decisions such as CPR is often not merely about a ‘right’ decision based on one or two ‘correct’ ethical principles. When a patient becomes mentally incapacitated near end of life, what is in the patient’s best interest (more accurately ‘best interests’ – it is not a single dimensional concept of benefit) is a mix of medical prognosis, judgement of benefit and burden of further active – possibly aggressive – interventions, and patient’s prior expressed wish and known values.
A DNACPR decision may be made easier if there is a clearly written valid and applicable advance directive. In this case, Mrs. Tsang’s prior expressed preference (to live on) reflects her values at the time of the conversation, but it does not amount to a clear advance directive. In any case, an advance directive states what medical interventions a patient would not wish to receive when his/her condition has come to a certain future state (e.g. irreversible coma, terminally ill). Even if a patient had expressed a prior wish not to withhold CPR under any circumstances, the medical team is not obliged to always follow the patient’s instruction. The judgment of the medical team would also factor in the decision.
When the case doctor advised Ga Yan that, in his judgment, CPR would not be in Mrs. Tsang’s best interest, it is unclear whether he has taken into account Mrs. Tsang’s prior expressed wish. He can try to explore with the daughter about the context for her mother’s wish – e.g. did her mother have a good understanding about CPR and the expected outcomes for someone in her condition? Perhaps her mother’s statement is an expression of her worry that the doctors would “give up” on her rather than to be interpreted as an advance instruction on her CPR decision.
If this is the case, then it may problematic to request Ga Yan to come back with a ‘decision’ on CPR or DNACPR. This creates a substantial psychological burden for her, implying that it would be her sole responsibility to come up with this ‘decision’ in the fact of conflicting considerations. If CPR is considered to be not indicated, it is preferable for the medical team to state that more explicitly, to clarify from the outset and such decision is a shared decision between the medical team and the family, making reference to patient’s prior wish and values.
The Law in Hong Kong does not adopt the U.S. legal framework for surrogate decision-making by family members. As such, what the family members are asked to do, in most circumstances, is a substituted judgment – imagining what the patient would have wanted if she were still able to express her views in this particular scenario. Substituted judgment is a meaningful concept that many lay persons (possibly also healthcare professionals) would find difficult in practice.
Noting that the son of Mrs. Tsang is flying back immediately from Canada, if the patient’s condition allows, it is desirable to hold a family conference after he is back, to better inform him of the Mrs. Tsang’s present medical condition and prognosis.
What if Mrs. Tsang deteriorates quickly with cardiac arrest and there is no time for shared decision making? We do not have sufficient information on the medical prognosis, including whether Mrs. Tsang is likely able to come off the ventilator once resuscitated. From the given information, it is not clear that Mrs. Tsang’s condition is medically futile (in the strict sense of physiological futility), CPR may still be justified. In such case, suitable counselling and support should be provided to Ga Yan, to relieve her of the sense of guilt from filial piety.
Finally, it may be noted that the original message given to Mrs. Tsang and Ga Yan concerning the ‘requirement’ for enrolling in the direct admission programme to the geriatric ward is somewhat problematic. Whereas it may be a fact that the programme is designed to serve patients who indicated a wish not to receive CPR in the advance care planning process, it is quite another matter to ‘require’ a patient to agree to DNACPR just because he/she prefers direct admission to the geriatric ward as part of her goal of maximizing comfort. Good end of life care programmes should not use their services as ‘incentives’ to influence the patient’s DNACPR decision. I am sure this was not the intention of the clinical team, but careful communication is needed here.