From Evan Benjamin, Sue Gullo and Francine Maloney of Ariadne Labs
Pandemic precautions require a certain degree of restriction to protect both staff and patients; however we can still provide safe, effective communication that supports dignity and respect, information sharing, participation and collaboration. These are the core principles of Patient and Family Centered Care.
We can build on current systems and processes to ensure that when one door closes, another door opens. Facilities can establish a reliable communication system that supports patients and families with a flow of information, while balancing the burden bedside providers are also facing. We must. It may be our family today or tomorrow, and we know it is not acceptable to have no access to our loved ones.
A call to action to support a patient and family communication system—whether it be by phone or video—is necessary to provide support and empathy to those on both sides of the bed. The focus on the importance of patient and family centered care cannot be lost now.
From Heidi Marlin, MD of HopeWest
While we wait for the world to return to normal, or a new normal, most of us will experience many unexpected emotions during the COVID-19 pandemic– fear, anger, disbelief, grief, frustration, and infinitely more. Much of the uncertainty and feelings we experience as events unfold makes life feel out of our control. Unfortunately, we often can’t control or predict the diseases that may affect us during our lifetimes, whether this is the common cold or more life threatening conditions such as cancer. Imagine the experience of a mother of young children with a new diagnosis of breast cancer or the grandfather with worsening heart disease unable to travel to attend a grandchild’s birth or even enjoy day to day activities that we take for granted. We never know what awaits us around life’s unending corners.
One thing that you can control is the type of care that you want to receive should you become critically ill. You can do this in the form of written Advance Directives from your primary care provider or multiple sources online. With the uncertainty of the current COVID-19 pandemic, it may be sooner rather than later that we need to consider basic questions about how we want your care directed in a critical situation. These difficult conversations may feel dark and overwhelming, but they are easier to consider before you or your loved one is gravely ill. They can also be the critical piece that helps your medical providers to direct your care according to your goals and values. Documenting your care goals with Advanced Directives also supports the people you love by letting them know what care is best for you if you are unable to communicate this when you are critically ill. Imagine travelling two hours to be at the bedside of a loved one in a coma in the ICU and needing to guide their medical team to give the care they would want. This is a very difficult and overwhelming position to be in if you do not know the desires of your loved one.
Along with Advance Directives, there are other important questions to consider. Have you picked a person who knows you well enough to talk to doctors for you if you get really sick and are unable to speak for yourself? Is that person your medical power of attorney?
While we always hope for the best, we know the COVID-19 virus hits the oldest and most frail among us the hardest. It can also strike those of us who are relatively healthy who are far from considering the end of life. For the sickest patients infected with COVID-19, failure of the lungs, heart and other organs may occur. These patients may be offered a breathing machine (ventilator) to support their lungs. Unfortunately, a ventilator may well not prevent death in patients with multiple serious health problems. Even if death is initially prevented, the patient may be very debilitated and require long-term assistance with everyday activities with an increased risk of death over the next several months. I wish this was different. However, it’s important to consider these issues as you decide what your goals are for your health and the care provided to you. In these uncertain times, it is important to discuss with your family or medical provider your most important goals if your health situation worsens.
Our healthcare systems and our community are working at full force with a dedication that has rarely been seen. Regardless of the decisions you make, our healthcare teams will be there to support you. When there are no options left to cure, there are always options to provide care that focuses on comfort and quality of life. Ironically, this focus helps people to extend their life when they no longer have the stress of pain or treatments that may debilitate them even more.
As a palliative and hospice physician, my job is to help people find the peace of mind to continue to write their life’s story during a serious or terminal illness. I work to identify pieces within their control and what choices they have in the moment with the hope they can focus on what is most important for the time they have left.
For further guidance in thinking about advance care planning for you or talking with your family, please look for more resources on the HopeWest website or through the National Hospice and Palliative Care Organization. Also, please consider reaching out to your own primary care provider for a telemedicine or virtual visit to discuss your concerns and advance care planning.
Please stay safe, stay home, and keep washing your hands.
