Open Letter from DignityMA regarding Masking, Patient Safety, and Trust

The following two letters were sent to Health System Leaders in Massachusetts, on the occasion of suspending masking requirements and covid protections in health care settings.

Download the two letters, or read below from May 10, 2023

Open Letter on Masking, Patient Safety and Trust

A call to suspend any end to universal masking and other covid precautions

until trustworthy approaches are in place

May 10, 2023

To Health System Leaders in the Commonwealth:

On behalf of Dignity Alliance Massachusetts, an alliance of advocates for older adults, people with disability, and their caregivers, we urge you to suspend any ending of masking requirements in your health care settings until additional steps have been taken to engage patients and their caregivers in decision-making that ensures their safety and addresses their concerns. We believe this is essential to demonstrating to patients and communities that they can have justifiable trust in you.

It is clear to us, as explained in more detail below, that the current approach to ending universal masking with the expiration of the public emergency on May 11 will severely damage, with lasting negative consequences, the trust that vulnerable patients need to have in their health care providers.

Fortunately, we believe that it is not yet too late to change course. It is still possible to use the growing furor over masking issues as an opportunity for all of us to reaffirm our commitment to health equity, and to demonstrate concretely our commitment to collaborating with patients and communities in ways that deepen trust rather than undermine it. We applaud and strongly support the recent request from the Co-Chairs of the Joint Committee on Elder Affairs that the Department of Public Health extend the state requirement for universal masking in health care settings. But we also believe that ultimately the primary responsibility for ensuring safety in health care settings, and for strengthening trustworthy relationships with patients and communities, lies with you, the leaders of our health care systems.

Of all the lessons we have learned during the covid pandemic, none is clearer, and none is more important, than how crucial trust is to effective health care, especially for the most vulnerable in our communities, who need effective health care the most. We have also learned that the crucial prerequisite to achieving trust is for individuals and organizations providing health care services to actively and consistently demonstrate that they are deeply trustworthy.

Trustworthiness can be demonstrated in many ways, including:

maximum transparency in how decisions affecting patients are being made, including both the processes through which decisions have been made, and the reasoning behind those decisions;
proactively reaching out to patients and their communities to understand their needs and concerns; and
engaging patients and their communities as active partners in designing solutions that ensure their needs and concerns are appropriately addressed, as much as possible to their satisfaction.

The approach to date of plans for discontinuing universal masking, and also of plans for ending other covid protections (including routine pre-admission testing), appears to be grossly violating all three of these. The serious and legitimate concerns that members and constituents of Dignity Alliance have expressed to us, sometimes with deep anger at what seems to them to be a profoundly-disrespectful disregard of their perspectives, include:

a markedly lower rate of covid infection in the general population is not evidence that there is an acceptably-low risk of covid transmission in health care settings, where those most likely to be infected with covid are most likely to concentrate;
even a low probability of covid transmission in a health care setting does not mean that that setting is safe for vulnerable patients, including older adults and people with disability and serious medical conditions, for whom infection with covid remains one of the leading causes of death, as well as a leading cause of prolonged disability because of long covid;
choices by concerned patients to wear masks does not provide optimal protection to them in settings where others are unmasked;
for people with disability, some of whom are unable themselves to wear highly-protective masks, currently-planned approaches to masking appear to violate the legal obligation of health care settings to provide “reasonable accommodations” under the Americans with Disabilities Act

We urge you to suspend any ending of universal masking and other protective measures until steps have been taken to engage patients and communities in ways that lead to adequate responses to their immediate concerns. We believe this is required in order to regain their confidence in the immediate term. We also believe that when this is done well, and then generalized to other issues that affect the health and well-being of vulnerable patients and communities, we can and will be on a much better path to making “health equity” in the Commonwealth a reality, with high levels of justified trust in health care providers.

We are eager to be helpful to you in this in any ways that we can. We would welcome your reaching out to us about how we can work together to ensure in the Commonwealth that older adults, people with disability, and their caregivers can all have the most solidly-justifiable confidence that the individuals and organizations involved with their health care are as trustworthy as we believe you aspire to be.

Sincerely,

Paul J. Lanzikos, Co-founder, Dignity Alliance Massachusetts; Former Secretary of Elder Affairs

Bill Henning, Co-founder, Dignity Alliance Massachusetts; Executive Director, Boston Center for Independent Living

Arlene Germain, Co-founder, Dignity Alliance Massachusetts; Co-founder, Massachusetts Advocates for Nursing Home Reform

Richard Moore, Co-founder, Dignity Alliance Massachusetts; Former President Pro Tempore, Massachusetts Senate

Lachlan Forrow, MD, Coordinating Committee Member, Dignity Alliance Massachusetts; Senior Fellow, Harvard Medical School Center for Bioethics

Noel Sanders, Member, Dignity Alliance Massachusetts; Boston Center for Independent Living

Colin Killick, Member, Dignity Alliance Massachusetts; Executive Director, Disability Policy Consortium

Letter to Health System Leaders on Universal Masking and Other Covid Protections

Dear Health System Leaders:

We would like to preface what follows with an expression of deep admiration and gratitude for the heroic efforts that you, and especially so many thousands of your frontline staff, have engaged in throughout this devastating pandemic. In the face of extraordinary challenges, your tireless commitment to ensuring that the people of the Commonwealth, including especially our most vulnerable residents, have been able to receive the care they have needed has been deeply inspiring. We have also been deeply inspired by the unquestionably heartfelt commitments so many of you have made to learning from the pandemic, to refusing to return to “business as usual”, and to addressing the historic inequities in care that made the pandemic so devastating to the Commonwealth’s most vulnerable residents.

We are nonetheless deeply concerned that, with the ending of the public health emergency, the approaches being taken to lifting covid precautions are incompatible with a serious commitment to new and better ways of working.

Attached, and online here, is an open letter on behalf of Dignity Alliance Massachusetts, a statewide alliance of advocates for older adults, people with disability, and their caregivers. We appeal to you to suspend the ending of universal masking and other covid protections until you have engaged concerned patients and communities in ensuring that they can have justifiable confidence that it is safe for them to visit your facilities. We are deeply concerned by the growing number of our members and constituents who have, with increasing intensity, expressed to us their sense that you are not adequately concerned about their safety. Many of them who have serious medical needs have told us that they will not seek care that they know they should have because of worries that it would be too dangerous. Whether or not you believe their concerns about their safety are warranted, their concerns are very real, and we hope you will take active steps to engage with them in ways that ensure that they can and will have justifiable confidence in the trustworthiness of health care facilities and their leaders and staff.

Despite the seriousness of the increasing distrust our members and constituents have been expressing, we are convinced that it is not too late to reach out to concerned patients and communities in ways that can get us all back on a path of deepening and well-deserved/earned trust. But we worry that if active corrective steps are not taken quickly, serious lasting damage will have been done that cannot easily be repaired.

We are eager to be helpful to you in any ways we can, so please do not hesitate to reach out to us if you think we can be useful.