2.1.2 Coming to accord on goals and services


Care planning starts with the frail elderly person’s direct involvement as possible, or with a suitable surrogate speaking on the elderly person’s behalf otherwise. Family caregivers and long-term paid caregivers usually should participate in designing and implementing the care plan, unless the elderly person objects or a caregiver has not yet been identified. The elderly person’s priorities, treatment preferences, concerns, and future goals should anchor the care planning process. Information from clinical and social assessments, a list of medical diagnoses, and perspectives on the most likely course and the options for services that might affect the course often help to shape and sharpen the elderly person’s priorities. The care team is charged with ensuring that potentially attractive options for support or treatment are offered and explored, including those that focus on supportive services and those that entail substantial medical intervention.

The options presented should have a real chance of being beneficial to the patient. Medical interventions that offer no benefit should not be mentioned, unless the patient or a family member asks about them. More problematic is the wide array of medical services that are often used but which offer very little benefit and, often, create the possibility of adverse effects or incidental findings that will cause further testing, treatment, and costs.[44] In a MediCaring Community, the medical clinicians should confer with affected elders, family members, and other clinicians in order to develop shared understandings of the merits of burdening patients and families with information about low-value (and possibly harmful) medical interventions like these. Some, like cardio-pulmonary resuscitation, might be widely misunderstood and merit discussion with each elderly person and family. Successful resuscitation is exceedingly unlikely and harms from the effort are obvious.[45] Other overuse situations, like multiple imaging studies for straightforward diagnoses, have grown up in an environment in which the patient and the physician have not needed to attend to costs, so any putative chance of benefit seemed adequate to justify use.[46],[47]

The MediCaring Communities model will not bar access to any medical services covered under Medicare (or Medicaid). However, frail elders and families will choose to undertake some costly and burdensome medical treatments much less often when they are informed and engaged.[48],[49] Rather than making any medical test or treatment unavailable, the MediCaring approach aims to ensure that frail elders and family members clearly understand just how much—or how little—certain procedures would be likely to offer. In this way, elderly persons will not find themselves barred from medical treatments that they understand and want. Rather, elders and their families would be part of the decision-making process and would be enabled to understand and decide which treatments really serve them best. If a frail elderly person is now 80% likely to get a test or treatment that is of dubious value, better counseling and care planning might well reduce that rate to 20%. So, a person who needs one imaging study will not end up having three, and an elderly person who does not stand to benefit will not be channeled into having an overwhelmingly burdensome operation that is appropriately routine and quickly healed for younger people.

Articulating goals and preferences turns out to be an underdeveloped art form. Some physicians just ask whether the person is more invested in a long life or a comfortable one, and therefore whether the person is willing to forgo life-sustaining interventions in what would otherwise be an emergency effort at rescue. This is important, of course, and is the set of decisions that are behind the POLST (Physician Orders for Life-Sustaining Treatment) movement that has authorized a version of the POLST form in seventeen states).[50] But the POLST is not a complete care plan; it just provides physician orders to guide an emergency situation.

Frail elderly people and their families and surrogate decision-makers do not routinely articulate their goals and values, and when they do, substantial interpretation is usually required in order to translate them into a plan for services and actions. Asking baldly for what is most important to you at this stage of your life sometimes gets useful input, but sometimes gets tangential responses like, “Win the lottery.” Usually, getting to understand a person’s priorities takes some give and take in conversation. This requires substantial trust on the part of the

People living with frailty and facing eventual death usually do not have just one goal—they have goals about relationships, spirituality, symptoms, finances, survival, and so on. We are complicated beings, after all. But the care team does need to come to understand the elderly person’s perspective and the contribution of his or her family, and usually needs to condense the discussion into a small set of key goals for which actions of the care team (including the elderly person and family) can make a difference. These may be prosaic, as in, “I want to be able to walk to the mailbox,” or they may be inspiring, as in, “I want to complete my last great painting.” Characteristics of a helpful set of goal statements are these:

  • That they actually reflect what matters most to the elderly person (and family),
  • Achieving them is possible and is affected by the services provided, and
  • One could know if they were achieved.

In addition to settling on the goals and priorities, the discussions that lead to good care plans have to settle on the services to be provided. Service selection is an endeavor that requires knowing what can be done for this elderly person and family at this time, how different plans are likely to affect the person, what sorts of services are acceptable to the elderly person and family, and what decisions they can be ready to make. Usually, the discussions of goals and services are iterative. Insights about what would be entailed to achieve a goal can affect the desirability of that goal. Insights about the desirability of particular goals can affect what service arrays are explored. Usually, the discussions end up with a convergence as to how to move ahead. Any shared decisions should be documented in a way that allows the responsible parties (including the elderly person and family) to re-visit the plan at particular future times or when needed. The documentation should articulate the goals and the agreed-upon strategies, as well as the key factors that contributed to the decisions.

The actual work of negotiating a care plan can take many forms. Sometimes, one skilled care team member and the elder or surrogate are the only ones involved. Sometimes, the negotiation can be done asynchronously by email and other communication devices. Often, the key team members all meet in person or by telecommunication to go over the situation together, to explore options, and to settle on a plan.[51]

Of course, in human interactions, not all situations come together well. Perhaps the family and elder do not trust the medical team, or the personal styles of interaction do not mesh well, or any of dozens of other dysfunctions arise. In many cases, high-functioning care teams can creatively solve these problems, at least often enough that the vast majority of frail elderly people can have a workable care plan that is feasible, trustworthy, and allegiant to what matters most to the elder and family. PACE and hospice programs enjoy a good reputation for care plans that reflect the patients’ values and priorities and guide care.

[44] (Choosing Wisely 2016)

[45] (Murphy, et al. 1994)

[46] (Shen, et al. 2004)

[47] (Berenson and Docteur 2013)

[48] (Cassel and Guest 2012)

[49] (Phillips, et al. 1996)

[50] (POLST 2015)

[51] (Bokhour 2006)

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