The Value of Advance Care Planning for Spokespersons of Patients With Advanced Illness

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

“…We recommend that when researchers are choosing trial primary outcome measures that they try to include measures that have at least the core pragmatic characteristics; though not all of the usual psychometric criteria may be relevant depending on what the researcher is trying to measure. Furthermore, some level of consistency or standardization is needed in the use of outcome measures to enable the ability to compare across studies to more accurately measure the impact of ACP interventions in PLWD or their care partners; though it is important to consider the impact of the intervention setting when interpreting study findings as results can vary in different settings 62–64 …”

“…Furthermore, some level of consistency or standardization is needed in the use of outcome measures to enable the ability to compare across studies to more accurately measure the impact of ACP interventions in PLWD or their care partners; though it is important to consider the impact of the intervention setting when interpreting study findings as results can vary in different settings. [62][63][64] Novel outcome measures also need to be developed using patient, care partner, or clinician reports of patient experiences, provided these measures are brief, meaningful to key stakeholders (i.e., providers, patients, leadership), and could be readily embedded into EHRs and routine clinical practice. One example is the two new PCROs developed by the American Academy of Hospice and Palliative Medicine which measures how much a patient feels heard and understood and whether a patient received desired help for their pain.…”

Obtaining and Paying for Home Care—Navigating Patients Through the Complex Terrain of Home Care in the US

“…Reducing delays in planning could afford patients and their families the time to learn about their home care options and navigate a complex system. For this to be a useful model, it is critical to look to the portions of ACP that are effective at helping patients and their loved ones plan, namely, through iterative discussions about care options, needs and preferences, and care planning . One practical way this could take shape is by providing navigation hubs to guide home care planning, an item for which there has been a recent call…”