Stepping Up Levels of Care: When is the right time and who decides?
After reading the case, visitors are invited to share how one might approach this situation. There is a "Post a Comment" link at the bottom of this entry and you may use the questions for reflection at the end as prompts.
Harold and Betty have been married for 35 years and live independently in an apartment in Florida. Harold is 91 and Betty is 90. In the surrounding area, their only relatives are Betty's sister 78, whose wheelchair bound husband, requires her full time attention. Harold and Betty have adult children and adult grandchildren in California and New York. The children have become increasingly concerned about their parents, their parent's health and overall welfare. Harold and Betty consistently refuse any kind of household assistance, including a cleaning service.
Harol has congestive heart failure with frequent shortness of breath. The walk up the flight of steps takes a toll on him. A lean 6'2'', Harold is also a bit unsteady on his feet particularly when he gets out of breath, which happens with increasing frequency. He has full cognitive abilities and though he is largely blind, he passed the sight test and had his driver's license renewed. When they need to get groceries or to go out for an afternoon to the bookstore, Harold will drive to the nearby shopping center less than a mile away with Betty as the lookout. Harold feels somewhat anxious about his health, especially when he gets short of breath, but he doesn't want a fuss made over him. He prides himself on not being no trouble to no body, and he feels confident that he and Betty are managing quite well despite their childrens' concerns.
Betty is in excellent health, except for her vision. Her ability to see things up close has diminished almost completely making her passion for crossword puzzles, love of reading, and joy for gardening real challenges. A couple of years ago, she tripped and broke her ankle but she is fully recovered now. She recognizes that at some point, she and Harold might need more restricted living arrangements, but she doesn't see the need for any change at this juncture. She doesn't think it is necessary for them to have any additional help, and fires everyone who gets hired by well meaninged but distant children within one visit. She doesn't like the trouble of having someone else in the house to help with cleaning or groceries. She doesn't want to leave their home for "a place that one goes to die" and she enjoys her independence - the nearby shopping center for an afternoon lounge at Barnes and Nobles.
Betty's son and his wife come for a visit and observe that the house is quite dirty. Since neither Betty nor Harold can see this is not surprising, however, they are concerned about the state of the house and their parents ability to really take care of themselves. They notice how wobbly Harold appears and how quickly he gets out of breath, even just getting from the house to the car. They are concerned that a fall for him would be severely catastrophic. They live across the country and know that the only thing that they can do is hire someone to come in and clean. Previous attempts have lasted one visit and Betty always finds a reason to fault the hired help. When Betty's son and his wife call Harold's daughter, the children agree that it is time for their parents to go to a stepped up level of care immediately. They call their siblings and the other children agree, but do not have a similar sense of urgency, particularly since their parents do not feel it is necessary and are not yet ready and/or willing to consider this change.
Questions for Reflection
How does one approach this situation?
What are the issues raised in this case?
Is this an ethical dilemma? If so, how would you articulate the ethical conflict?
Do you need any additional information? If so, what is it and why/how is that relevant?
What knowledge (ethical, legal, medical, philosophical) might be relevant for analyzing this case?
How would each of the different perspectives justify their response?
What is a reasonable path forward? Are there multiple approaches or only one?
Please leave comments, ideas, questions, and insights using the comments feature below. When you leave a comment, you may do so anonymously or with your name, but it would be very helpful if you indicated your role/discipline to assist clarifying your perspective. (RN, Geriatric care plan manager, family member, elder, caregiver, MD, MSW, Case manager, etc.)
July 11, 2008 at 09:52PM | norton |
Norton, Thank you for your comment. You raise some important considerations that arise in this situation:
Geographic mobility often creates or contributes to the difficulties faced by people when the time comes for these kind of transitions - increasing assistance/stepped up levels of care. In an increasingly mobile and migrant society, what will the impact of these patterns present for the care of elders? Whose responsibility is it to move? who needs to move? Often adult children are in jobs (economic necessity) or with families (children in school) that might limit their ability to move to where their parents are residing in order to provide the kind of support that would supplement the parent's situation.
In this case, Betty & Harold moved when they married away from New York (home) to retire in Florida. Most of their children moved to California as adults. As is common, people often move to a different location for retirement, and their children often move to other locations as well. Would it be appropriate to expect the children to move to where their parents moved to at this later stage in their respective lives?
filial duty, societal obligations
Differing notions of filial duty, familial responsibility, and the obligations of society/state may influence how we view this situation. Social groups with more communitarian outlooks value interdependence and interconnectedness as the root of human engagement, whether as social groups with an individualistic outlook see liberty and self determination as the basic unit of existence and secondary to the individual are relationships with others, the highly valued liberty interest is fiercely protected from infringement by family, community, or government.
Some might perceive the responsibility as entirely and appropriately falling upon the children, while some might perceive the responsibility as appropriately falling upon Betty & Harold, as the 'parents' in this case to use their own resources to face these transitions, and some might perceive the responsibility for responding to Harold & Betty's needs as appropriately one of society's to address.
impact of changing family structures
Further contributing to these situations are shifting family structures. This is Betty & Harold's 2nd marriage, and their adult children have both their parents, their step-parents, their inlaws' parents, their children, and themselves (approaching 65) to look after in the midst of this situation. To what extent might this impact and change the roles and responsibilities of decision makers, if at all?
elders generally versus these individuals
The principled approach of traditional clinical ethics seems of questionable value/relevance in the community setting. People living in the community remain in a context that fully embraces their values (compared to a hospitalized context, which, ideally, will integrate the individual's values, but based upon the setting/context frequently imposes its values upon the person). Perhaps, in the community context, it is more appropriate to look at people as individuals within their personal circumstance - particularly where such significant issues (their freedom/independence) are at stake.
However, it may also be worth considering whether the case by case approach leads to more disparate treatment, because those who are wealthy and can afford specialized, personalized care are able to receive that care whereas those who lack funds are subject to much more restrictive measures and run the risk of further marginalization (due to minimal political power to advocate for themselves once within these restrictive environments). Does the approach of an individual or a general "class" of people impact the resource development and/or utilization? Who are the champions for development of flexible resources that accommodate a spectrum of transitions and does it differ if we approach these kinds of community based dilemmas using an individual framework v. a generalized approach? Are these development efforts most appropriately initiated as public, private, NPO, or Social Enterprise ventures?
Considering the actual experience of individuals seems particularly vital, especially when their individual liberty is at stake based upon a concern over their safety by those around them (of note, not necessarily by them); however, developing a framework that integrates consideration of the diverse needs of individuals to promote the least restrictive, least infringing means for 'safety' seems equally important.
short term versus long term
The trade offs in this case are significant. When one begins to lose one's ability to be self sufficient, it often means that the little independence/autonomy, one retains increases in value. "independence is everything"
The peace of mind of having Betty & Harold in a facility might ease the children's anxiety, but it might pose real emotional strain for Betty & Harold, particularly if they aren't 'ready' to make the transition. Alternatively, if Betty & Harold remain in their home their might be much happier and more comfortable yet the extended freedom may invite a different, more significant problem (such as a fall resulting in permanent, severe debilitation).
One approach to consider might be a short term consideration of autonomy (one may choose to stay independent and enjoy short term freedom with the likelihood of a fall that will lead to an increased risk of restrictive longer term care and ongoing disability) in contrast with a longer term consideration of autonomy (one may accept the short term constraint of a more restrictive level of care, with the knowledge that one will be supported, safe and more likely able to live well for a longer time in this lesser restrictive setting).
Who needs to be in this conversation?
Calling in the whole family as well as collaborating with a multi-disciplinary care team seem critical to supporting these kinds of life transition decisions.
Engaging a primary care physician who may have had an ongoing relationship with Betty & Harold could be helpful. In the ongoing managed care plans environment, often continuity of primary care providers even among medicare members means that primary care physicians may not have had a long term relationship with their patients.
As well, considering what social service resources might be available to assist Betty & Harold to remain in their current situation - such as visiting nurse services, meal delivery, home health aides, etc. Unlike, clearly 'clinical' decisions, this transition proposes a multi-dimensional change for these parents, and tapping into community and social service resource networks may be invaluable.
social services, medicare, the policy perspective
As noted, the availability of comprehensive resources is critical for navigating this kind of decision - whether there is stepped up level of care that is truly appropriate for this couple's needs (rather than overly restrictive) and/or whether there are adequate community resources to meet their current support needs sufficiently to enable them to remain in their home safely. Who is overseeing that these services exist, are integrated within a community, and are affordable? Whose responsibility is it to develop the infrastructure for an emerging problem as the number of elders increases? What are the individual and collective costs of not being adequately prepared as a society to meet these emerging needs?
Your comment raised some critical points and offers an excellent starting point for further consideration of this case and how to approach these dilemmas that arise in the community setting.
July 22, 2008 at 11:35PM | Elder Ethics Administrator |
Excellent case and wonderful exchange. Other than noting that the case is genuinely representative of an increasing number of individuals and couples who, regardless of financial resources, cherish their independence and are reluctant to become even partially dependent on others, I have nothing substantive to add.
I suspect we should be much better informed of how we might apply the insights and lessons available from successful models in other cummunities both domestically and internationally. Perhaps prematurely, we conclude that cultural and other differences make it impractical to apply even any of what might be considered "best practices."
July 23, 2008 at 04:24PM | Paul B. Hofmann, DrPH,FACHE |
Paul, Thank you for your comment.
Situations like the one presented in this case are increasing globally with many countries facing an aging baby boomer generation compounded by improved chronic disease management, technology advances, and geographic mobility.
Indeed, independence, particularly within the US, is highly cherished raising the stakes in these 'transitions' decisions. Looking at how diverse communities approach these situations might support holistic and inclusive decision making as well as offer rich resources and insights that would enable transcending the tendency toward dualistic frameworks, such as, autonomy v. safety or independence v. dependence.
July 22, 2008 at 11:35PM | Elder Ethics Administrator |