This case concerns a man who has worsening pulmonary disease and who cares for his wife, who has mild dementia. How should his son, Alex, respond to the needs of his parents?
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This case concerns a man who has worsening pulmonary disease and who cares for his wife, who has mild dementia. How should his son, Alex, respond to the needs of his parents?
‘Let’s sit down, Father. Time to take a break,’ Alex Yap gestures to a bench along the path in East Coast Park.
‘Ah, okay,’ Mr Harry Yap drops down onto the bench, breathing heavily. ‘Don’t tell my chest physician. She is always telling me I am lazy, I must walk more.’
‘I remember when you and Mother would bring us here when we were kids. Every Sunday after lunch in Katong. We’d watch the ships in the harbour and race up and down the path.’
‘Yah, and then you would pester me to buy you ice cream!’ As they laugh, Harry starts coughing.
‘Dad, is that . . . helping?’ Alex gestures to the portable oxygen concentrator in the basket of Harry’s walking frame, and to the nasal cannula his father wears day and night.
‘I’m still here…’
‘Sorry, sorry,’ Alex checks his messages while Mr Yap catches his breath.
‘Okay. I’m fine now,’ his father says.
‘So . . .’ Alex continues. ‘What did you want to talk about, Dad? I don’t want to rush you, but I have to pick up the girls in about an hour . . .’
‘Ah, always on the go! So – my COPD. There are some procedures that might help, but if I’m in hospital, your mother. . . she’s a bit forgetful, and you know I can’t leave her on her own.’
‘Dad, we’ve got an extra bedroom. Maybe it’s time for you and Mother to live with us?’
That evening, Alex and his wife, Jessica, are making dinner in their 5-room HDB flat.
‘How’s your father?’
“Oh, you know Dad, putting a good face on things. His health isn’t good and he might need surgery, but he’s worried about Mother. I think it’s time for them to come live with us.”
‘This could work! The girls can share a room. It would be fine. After all, this is what families do.’
‘Alex, who’s going to look after your mother? Do I have a say in this?’ Jessica looks intently at her husband, ‘And who will be paying the medical bills?’
Respecting family relationships in the care of patients with chronic obstructive pulmonary disease
Commentary by Jacqueline Chin
Living with chronic obstructive pulmonary disease (COPD) is no walk in the park both for sufferers and family caregivers. Mr Yap is in an advanced stage of COPD and will increasingly need strong family support to help him with routine daily tasks, psychological support, and ideally a programme of exercise, psychotherapy, and end-of-life care planning. Mr Yap’s son, Alex, who is close to his parents, sees an obligation to help them, but Jessica, Alex’s wife, is less certain about this obligation. Alex’s parents need near constant and watchful assistance, with emergency hospitalisations to be expected, and it is unclear who will cover the high costs of Mr Yap’s COPD treatment and care. Can she and Alex cope with these responsibilities when they have young children? Is their HDB flat able to accommodate six family members, and possibly one more – if employing a domestic helper for housework or care work becomes necessary? Will Jessica’s parents also need care assistance? Will Alex share equal responsibility in the care of their parents? It is not mentioned in the case whether Alex or Jessica have jobs that may have to be given up or down-sized if Alex’s parents move in and need full-time care.
What does it mean to respect family relationships when healthcare needs within families create enormous caregiving and financial burdens, on the scale experienced in COPD care and dementia care? Physicians report that family relationships can and often do turn fragile under such circumstances, and it is important as a first step to consider who should have responsibility in a care system to identify both the objective and subjective burdens faced by individual family members so as to better understand how family relationships can be best supported. In Singapore, workers who pay taxes receive parental care and childcare relief, but this benefit is not available to persons providing child or parental care who pay no taxes either because they are unemployed, retired or in the lowest income bracket. This disparity means that the family caregiving work of segments of the citizenry is not awarded equal recognition and benefit. With Singapore’s old age support ratio at 5.4 in 2016, and projected to be 2.1 in 2030, men and women are not encouraged to leave the workforce, but many do because of the special burdens they face in trying to meet the needs of parents with severely debilitating long-term illnesses, when support fails due to fragmented or inaccessible care support services. The issue of coordinating responsibility for integrated support is a complex one due to the multiple unmet and sometimes hidden needs, outlined below, to be addressed on different policy fronts.
An example of an objective burden is cost, a topic discussed in Michael Gusmano’s commentary on financing in this case module. In addition to financial help for expensive treatments and therapies for Mr Yap that help relieve suffering, financial subsidies or in-kind resources should be considered. A second objective burden is the adequacy of living space if families of three generations decide to reside together or close to each other to facilitate assistance with care. Research shows that caregivers also have unmet needs that include better support from care professionals for physical conditioning and symptom control, information about the trajectory of the illness and end-of-life conversations and planning; and that professionals can relieve the caregiver burden through understanding that caregivers share the intensity of the illness experience with the COPD sufferer.
Subjective experiences of caregiving can be highly varied. Studies of caregiving in COPD indicate that spouses place caring within a framework of give-and-take in marital relationships, but care by a spouse is challenging or might be ruled out in Mr Yap’s case. In other studies, younger caregivers with work and childcare responsibilities are more likely to find caregiving burdensome, in part due to a lower level of perceived reciprocity in the parent-child or sibling relationship compared with relationships between spouses. Family caregivers with higher levels of education find it harder to accept the loss of independence and social experiences in caring for someone with COPD, as the disease can mean increasing confinement in the home for both the sufferer and caregivers. Different caring styles in men and women are also reported, with women carers more often being too proud to ask for help from other family members and men being more willing to seek external sources of help.
Respecting family relationships also entails considering how best to support them in this varied terrain of experiences of care. Mr Yap may experience less respect if he feels he has little choice but to live with family caregivers who are over-burdened or have difficulties accepting the caregiving role. Filial piety in such situations may mean seeking additional or alternative care arrangements for the ill person. But Gullick and Stainton (2008) observe that COPD patients and their caregivers often recognise that their family is ‘the best thing in life’, and many studies report that family provides a reason for the ill person to soldier on and is a source of connectivity and joy. As long as the family determines that living together is the best solution, there are compelling grounds here for the society to support them so that this situation is less burdensome for all involved.
Commentary by Chin, Jacqueline, ‘Respecting family relationships in the care of patients with chronic obstructive pulmonary disease’ in Chin, Jacqueline, Nancy Berlinger, Michael C. Dunn, Michael K. Gusmano (eds.), A Singapore Bioethics Casebook, vol. ii: Caring for Older People in an Ageing Society (Singapore: National University of Singapore, 2017), http://www.bioethicscasebook.sg.
When is it fair to limit public subsidies for expensive technologies?
Commentary by Michael K. Gusmano
Along with her concerns about the possibility of moving her in-laws into her flat, Jessica is worried about who will pay for the new, expensive treatments for her father-in-law’s COPD. The new drugs could relieve Mr. Yap’s symptoms, help him to stay out of the hospital and care for his wife, but the government does not subsidise them. The cost of new treatments that do not qualify for full government subsidies is a frequent source of tension for patients and families in in Singapore. Alex wants to provide appropriate support to his parents, but Jessica wants to make sure that doing so does not overwhelm the family. Understandably, she also wants to have a say in this decision because it will shape all of their lives. Although her primary focus is the burden of providing direct care, she is also worried about the financial implications of Mr Yap’s treatment.
This case raises several common concerns faced by patients and families in Singapore and other nations with advanced healthcare systems. Which drugs and other treatments ought to be subsidised by the government? To what extent is it reasonable to shift the costs of healthcare treatments to individuals?
When are out-of-pocket costs unfair?
These criteria are reasonable starting places, but they raise a host of questions. Reaching agreement on the meaning of these terms is a challenge. What does ‘major improvement’ involve? How are benefits defined and measured? Across the world, there are disagreements concerning how the value of technologies that add months or years of life should be assessed, but it is even harder to reach consensus on value when interventions relieve suffering. Most of the new, expensive treatments for COPD can relieve symptoms by decreasing airway inflammation and relaxing the airways, and by preventing exacerbations of the disease. They may help reduce the need for inpatient hospitalisations and may improve the functional status of COPD patients, but there is no evidence that they extend life.
Health economists often rely on so-called ‘willingness-to-pay’ surveys to determine the economic value of new drugs, but these surveys do not produce consistent results. Complicating matters further, placing limits on public subsidies for clinically effective technologies stands in tension with the idea, embraced by most countries, that distributing care on the basis of ability to pay is not justified. A system in which people are asked to cover most of the out-of-pocket expenses associated with effective care will exacerbate existing economic inequalities. Although most countries impose some out-of-pocket costs on patients, a just health system should not shift so many costs to people that they either go without the care they need or threaten their family’s financial security.
Limiting care for older people and intergenerational equity
Another question raised by this case is whether limiting public spending on healthcare for older people like Mr Yap may free up resources for younger people. Mr Yap has already lived a long life, but his children and grandchildren (along with other younger people in Singapore) have not had that opportunity to do so. Perhaps it would be more appropriate to spend limited public resources on younger people than to offer subsidies for expensive COPD drugs for Mr. Yap? Claims of this sort are often used to justify limiting healthcare spending for older people. The desire of Alex to help his parents, and the concerns expressed by Jessica, remind us that reality is more complicated.
Older people are often members of families. The children and grandchildren of current older people, rather than being engaged in a struggle for resources with their parents and grandparents, benefit from public spending on their older relatives and can be harmed if public subsidies do not exist. In Singapore, not only are children expected to care for their parents and grandparents, the healthcare financing system reinforces this expectation. For example, Singapore offers tax rebates that are designed to encourage Alex and his wife to top up Mr Yap’s Medisave account (https://www.iras.gov.sg/IRASHome/Individuals/Locals/Working-Out-Your-Taxes/Deductions-for-Individuals/CPF-Cash-Top-up-Relief/ ). This illustrates why it is important to understand transfers between population groups over a life time. Limiting healthcare spending on Mr Yap and other older people may place significant financial pressure on their children and grandchildren.
Commentary Perspective by Gusmano, Michael K., ‘When is it fair to limit public subsidies for expensive technologies?’ in Chin, Jacqueline, Nancy Berlinger, Michael C. Dunn, Michael K. Gusmano (eds.), A Singapore Bioethics Casebook, vol. ii: Caring for Older People in an Ageing Society (Singapore: National University of Singapore, 2017), http://www.bioethicscasebook.sg.
Supporting patients with advanced chronic obstructive pulmonary disease and their caregivers
Practice Perspective by Lim Tow Keang
Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality worldwide and is expected to increase in Singapore as the population ages. Patients have a high-symptom burden, low quality of life, and unmet needs at the end of life (EOL). Thus, the situation with which Mr Yap and his family has to cope is a common one as COPD advances. Patients suffer increasing breathlessness which severely limits their physical capacity, quality of life, and psycho-emotional well-being. Families have to bear a greater burden of assistance with daily life activities and finance.
There is an increasing number of new drug and device options in the treatment of COPD. While they do not improve survival they do relieve symptoms, prevent disease exacerbations, and preserve the quality of life. However, all of them are relatively expensive and not covered by any government financial subsidies. This is a major factor contributing to poor patient adherence and conflicts in the family when the outcome is uncertain and yet the patient suffers severe relapses requiring repeat hospitalisations.
Physical and psychological support
There is robust evidence that pulmonary rehabilitation and exercise programmes will improve the quality of life in patients with COPD although this modality of supportive care is extremely poorly received by local patients due to multiple systems and human barriers. These include the very strong motivation needed to persist with exercise training despite increasing breathlessness, the inconvenience of travelling to a centre for rehabilitation, and the cost of these programmes.
A major problem to be addressed in many patients with severe COPD is anxiety-depression. It is associated with worse outcomes and a high burden of hospitalisation.
Integrated COPD care
Caring for a patient with COPD requires a well-designed multiple-disciplinary programme which integrates cognitive behaviour therapy and psycho-emotional support with rehabilitative exercise and medication for breathlessness. This may involve taking multiple drugs with different devices, a regular exercise training programme with a professional trainer, relaxation for panic attacks from a psychotherapist, home visits by nurses and palliative care experts, and perhaps even admission to a hospice in the final stages.
Because of the complexities and uncertainties of EOL care for patients with COPD in the contemporary healthcare system, the patients cannot be left to cope by themselves as the advancing disease render them fragile and helpless. Effective engagement of the family is a vital element of this process.
Patients like Mr Yap who need continuous oxygen are in the advanced stage of the disease. They need help to address their EOL preferences and the practical arrangements to realise these goals.
EOL conversations about COPD
Due to the unpredictable disease trajectory and the focus on treating escalating symptoms as COPD advances, EOL care preferences and planning are often not addressed by their personal physicians during routine clinic reviews. Instead, this is commonly performed, out of necessity, during a crisis, in an emergency department setting amidst a life-threatening exacerbation with severe time, cognitive, and emotional constraints, which is less than ideal.
Mr Yap is already on long-term oxygen; this is a sure sign of late phase COPD, and his physician should now broach the subject of EOL preferences and advanced disease care at his next clinic appointment. Since this is a complex longstanding problem and, unlike cancer patients, Mr Yap may not have anticipated it, it should be approached carefully and indirectly.
One way to initiate an EOL conversation is to ask him to imagine a severe attack of breathlessness when he may not be able to speak or may indeed become unconscious; ask if he has considered this possibility and how he would like his care decisions to be made should he not have the capacity to do so himself. At this point it may be best to simply leave this question unanswered with him, perhaps with an information leaflet and patient decision aid on ‘personal choices’ of care and let him reflect and talk the issues over with his family. Advanced medical care nowadays is complex with a wide array of choices and costs, and having the patient make some decisions while he has the capacity to do so will prepare his loved ones and also help his doctors do a better job as the disease progresses.
It is most important that his physician emphasises that palliative care will be integrated with disease-specific ‘active’ therapies for him. And that it is not a case of stopping active care and switching over to palliative care alone. There is undoubtedly, an overlap between life prolonging therapy and palliative care, and maximising Mr Yap’s quality of life throughout the continuum of care should be prioritised.
Commentary by Lim, Tow Keang, ‘Supporting patients with advanced chronic obstructive pulmonary disease (COPD) and their caregivers’ in Chin, Jacqueline, Nancy Berlinger, Michael C. Dunn, Michael K. Gusmano (eds.), A Singapore Bioethics Casebook, vol. ii: Caring for Older People in an Ageing Society (Singapore: National University of Singapore, 2017), http://www.bioethicscasebook.sg.