It is always a difficult topic to discuss with family – to help navigate the fine line of what’s “best” for a patient with a progressively declining condition such as dementia. But it is also important to establish a mutual understanding as soon as possible so that everyone is clear how to best manage the resident if his or her clinical status changes unexpectedly.

A classic example is when a resident’s oxygen saturation suddenly declines with acute respiratory distress; the clinician may be thinking it is pneumonia, acute exacerbation of COPD or congestive heart failure. Maybe it can be managed at the nursing home but the family may feel more comfortable transferring the resident to the hospital, with the impression that there are more resources and support.

But little do they know the hospital is in Code Gridlock which means they do not have sufficient beds to attend to all the incoming patients. So the poor resident sits in a hallway for a good 24 hours, only to be returned to the nursing home with a severe pressure sore on her buttock, causing more pain and grief.

This is a common problem.  Recently, Hanson et al published their findings on the use of a structure tool to frame and record care preferences at the JAMA Internal Medicine.  Below is the abstract from this study:

Importance  In advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired.

Objective  To test a goals of care (GOC) decision aid intervention to improve quality of communication and palliative care for nursing home residents with advanced dementia.

Design, Setting, and Participants  A single-blind cluster randomized clinical trial, including 302 residents with advanced dementia and their family decision makers in 22 nursing homes.

Interventions  A GOC video decision aid plus a structured discussion with nursing home health care providers; attention control with an informational video and usual care planning.

Main Outcomes and Measures  Primary outcomes at 3 months were quality of communication (QOC, questionnaire scored 0-10 with higher ratings indicating better quality), family report of concordance with clinicians on the primary goal of care (endorsing same goal as the “best goal to guide care and medical treatment,” and clinicians’ “top priority for care and medical treatment”), and treatment consistent with preferences (Advance Care Planning Problem score). Secondary outcomes at 9 months were family ratings of symptom management and care, palliative care domains in care plans, Medical Orders for Scope of Treatment (MOST) completion, and hospital transfers. Resident-family dyads were the primary unit of analysis, and all analyses used intention-to-treat assignment.

Results  Residents’ mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women. With the GOC intervention, family decision makers reported better quality of communication (QOC, 6.0 vs 5.6; P = .05) and better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P = .02). Goal concordance did not differ at 3 months, but family decision makers with the intervention reported greater concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P = .001). Family ratings of treatment consistent with preferences, symptom management, and quality of care did not differ. Residents in the intervention group had more palliative care content in treatment plans (5.6 vs 4.7, P = .02), MOST order sets (35% vs 16%, P = .05), and half as many hospital transfers (0.078 vs 0.163 per 90 person-days; RR, 0.47; 95% CI, 0.26-0.88). Survival at 9 months was unaffected (adjusted hazard ratio [aHR], 0.76; 95% CI, 0.54-1.08; P = .13).

Conclusions and Relevance  The GOC decision aid intervention is effective to improve end-of-life communication for nursing home residents with advanced dementia and enhance palliative care plans while reducing hospital transfers.

In this study, families where they have completed a POLST were more likely to have received care consistent with the family wishes and were associated with less hospitalization. POLST stands for physician order for life sustaining treatment form and can have different names depending on the jurisdiction of the states that you reside in. In Canada, it may be referred to as Advanced Medical Directive or more informally as the Code Status.

I have visited the myself and have found that while the information is geared for use in United States,  there are many wonderful resources that we can certainly try to use in Canada. At least, I think we can develop  a similar approach to having a structured approach to the discuss the level of care that is most suitable for the residents and the families.

Certainly a verbal discussion is not sufficient. Any tool to help families and residents to visualize how care may be provided in nursing home vs. in a hospital setting  will help improve the quality of the communication.  I particularly like the educational videos for families so that they can watch at the comfort of their homes and be able to make a more informed decision for what is “best” for the residents.

The decision around the goals of care in advanced dementia is often difficult for family members. It needs to be reviewed often, especially after any major clinical status changes. It takes time to come to term with the right decision but families need more support to understand what is right and what is best. This promising approach of using video technologies and structured discussion will definitely help bring ease to a challenging topic for many families. I encourage you to check out their link here.