COVID-19 has had a devastating effect on older individuals living in long-term care (LTC) settings. The majority of deaths in most countries around the world have been in LTC settings (>80%).[i] This pandemic has highlighted the horrific problems with family visiting privileges, communication and care planning, and adequacy of basic care provided to residents in LTC. With the exception of restricting family visitation rights because of safety concerns due to COVID-19 infection risks, the problems being brought to the surface are sadly not new at all. The pandemic has just shined a spotlight on the under resourced section of our health care system.
Several years ago, we developed a measurement tool to capture patient and family satisfaction with health care called the “Canadian Health Care Evaluation Project Questionnaire (CANHELP for short).[ii] We developed and validated this satisfaction instrument in older individuals admitted to acute care hospitals, thinking that this population would be the most vulnerable and voiceless in society today. Our initial findings pointed to the greatest deficiencies (and thus the highest priorities for quality improvement) relating to communication, care planning and relational aspects with doctors looking after them.[iii] Subsequently, we adapted and validated this tool to capture the experience of the vulnerable and voiceless in LTC settings.[iv] We recently completed a project wherein we sent a survey to family members of LTC residents in 27 homes in Ontario.[v] This survey included specific questions related to communication and decision making and included the CANHELP-LTC version satisfaction measure. We found that physicians rarely initiated care planning discussions (<10% of respondents) and that families didn’t do any advance care medical planning because they didn’t know how to or didn’t know they needed to. Most disconcerting was the finding that the majority of respondents consider ‘keeping the resident as comfortable as possible’ as the most important value underlying medical care planning and yet the majority of residents involved in this study were signed up for transfer to acute care institution in the event of deterioration, which seemed incongruent with the patient’s values. When we asked families their satisfaction with care using the CANHELP instrument and how important each of the items on the questionnaire were to them, the things they said were most important and that they were least satisfied with were:
- Better illness management
- Better cooperation among LTC staff providing care
- Receiving consistent information about the resident’s condition from LTC staff
- LTC staff listening to substitute decision makers (SDM’s) concerns
- Improving trust and confidence of the SDM in the LTC physician looking after their loved one
At the same time, we surveyed clinicians working in LTC settings to get a sense of their barriers to communication and decision making.[vi] We found the top five barriers to improving communication and decision-making, from their perspectives were:
1) SDM’s difficulty accepting their loved one’s poor prognosis
2) SDM’s difficulty understanding the limitations and complications of life-sustaining therapies
3) LTC resident not having any form of advance care plan (ACP)
4) Not having adequate time to have conversations with LTC residents or SDM
5) Lack of adequate documentation of prior discussions with LTC resident or SDM
We have designed an infographic, here, to help explain both of these studies and were able to conclude that LTC residents are at risk of ‘over-treatment’ and poor-quality end of life care during times of serious illness and acute clinical change. The health care system needs to encourage all clinicians and patients to start engaging and documenting goals of care (GoC) and ACP discussions well before LTC admission so that documentation is readily available and accessible in LTC. Decision aids, like Plan Well Guide improve older adults’ and their family’s knowledge and preparedness to make health care decisions and could reduce the barriers to engagement by clinicians. Overall, building capacity to address unmet communication, planning, and care needs for these patients and their families needed to be a higher priority.
This research was conducted prior to COVID-19. So, the problems facing older individuals in LTC settings during COVID-19 are not new, nor will they disappear once COVID-19 abates. The real question here is, how do we use this ‘burning platform’ as a result of COVID-19, to put pressure on health care decision-makers and leaders in LTC settings to address some of these chronic deficiencies? One crucial piece to solving this puzzle is improving the communication and decision-making related to serious illness for LTC residents and their SDMs. Clearly, Plan Well Guide has a more active role to play. If you are interested in implementing and evaluating Plan Well Guide in your setting, please connect with me directly, at email@example.com.
[ii] Heyland DK, Cook DJ, Rocker GM, Dodek PM, Kutsogiannis DJ, Skrobik Y, Jiang X, Day AG, Cohen SR; Canadian Researchers at the End of Life Network. The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire. Palliat Med. 2010 Oct;24(7):682-95. PubMed PMID: 20605850
[iii] Heyland DK, Cook DJ, Rocker GM, Dodek PM, Kutsogiannis DJ, Skrobik Y, Jiang X, Day AG, Cohen SR; Canadian Researchers at the End of Life Network (CARENET). Defining priorities for improving end-of-life care in Canada. CMAJ. 2010 Nov 9;182(16):E747-52. PubMed PMID: 20921249
[iv] Nadin S, Miandad MA, Kelley ML, Marcella J, Heyland DK. Measuring Family Members’ Satisfaction with End-of-Life Care in Long-Term Care: Adaptation of the CANHELP Lite Questionnaire. Biomed Res Int. 2017;2017:4621592. PubMed PMID: 28706945.
[v] Sui H, Aora N, Howard M, Vahrmeyer A, Chidwick P, Borhan ASM, Heyland DK. The Impact of prior advance care planning documentation on end-of-life care provision in long-term care. Canadian Geriatrics Journal. 2020 (In Press)
[vi] Siu HYH, Elston D, Arora N, Vahrmeyer A, Kaasalainen S, Chidwick P, Howard M, Heyland DK. A Multicenter Study to Identify Clinician Barriers to Participating in Goals of Care Discussions in Long-term Care. J Am Med Dir Assoc. 2019 Oct 28. doi: 10.1016/j.jamda.2019.08.022. [Epub ahead of print] PubMed PMID: 31672570.