PHE - Resources

by Donald M. Berwick, MD, MPP1 How do humans invest in their own vitality and longevity? The answer seems illogical. In wealthy nations, science points to social causes, but most economic investments are nowhere near those causes. Vast, expensive repair shops (such as medical centers and emergency services) are hard at work, but minimal facilities are available to prevent the damage.

Based on your stories and feedback, Best Buy has made it a priority to align our benefit programs with caregiver needs to help you address these challenges. This guide won't cover everything you need to know, but I hope it gives you a place to start learning. I also hope it gives you comfort knowing that Best Buy supports you and those you care about. We're in this together.

"ARCHANGELS is a national movement and a platform that is reframing how caregivers are seen, honored, and supported using a combination of data and stories. We believe shining a light on caregivers so they feel seen, and honored, is the first line of care. Loving on them and thanking them for the work they do is the next step. And step three is lifting them up by providing resources that actually help. Our job is to find the things that make the good things about being a caregiver 'good-er,' and make the bad things better. "

mettacare isc survey results

Recommended by Janice O'Connor: These variables affect whether you live, die or get help during the pandemic. Race affects who can flee from a viral hotspot to a second home, who can't distance from infected co-workers and much more. Systemic racism is a public health issue, and the pandemic is making it worse.

"In a high-performing health care system, measurement drives progress toward safe, effective, efficient, timely, equitable, and patient-centered care. Measurement helps to identify priority areas for improvement, evaluate which changes make a difference in performance, and promote accountability. Measurement informs how health care is paid for, how resources are allocated, and, increasingly, how patients and their care teams make care decisions. "

"Without clear information from official sources, many long-haulers have found answers from one another. Support groups on Facebook have thousands of members. One Slack group, founded within a wellness organization called Body Politic, has almost doubled in size since June to more than 7,000 active participants from 25 countries. There are channels for discussing every organ system in the body. There are lists of sympathetic medical providers, and tips for convincing those who aren't listening. Eerily, the group's membership morphs as the pandemic spreads: "When Brazil had a huge spike, we had a massive influx of Brazilian patients," said Nichols, who is an administrator."

"Slack groups and social media are connecting people who've never fully recovered from coronavirus to collect data on their condition."

"Tuesday, August 18, 2020 Articles referenced: Systems entrepreneurship: a conceptual substantiation of a novel entrepreneurial "species" https://link.springer.com/article/10.... Your 'Surge Capacity' Is Depleted - It's Why You Feel Awful https://elemental.medium.com/your-sur... The Role Of Empathy and Compassion In Preventing Burnout https://medium.com/thrive-global/the-..."

Recommended by Kabir Kadre: "Abstract Importance  Home health care workers care for community-dwelling adults and play an important role in supporting patients with confirmed and suspected coronavirus disease 2019 (COVID-19) who remain at home. These workers are mostly middle-aged women and racial/ethnic minorities who typically earn low wages. Despite being integral to patient care, these workers are often neglected by the medical community and society at large; thus, developing a health care system capable of addressing the COVID-19 crisis and future pandemics requires a better understanding of the experiences of home health care workers."

Recommended by DeAunne Denmark MD PhD: "The Human Connection of Palliative Care: Ten Steps for What To Say and Do"

Recommended by DeAunne Denmark MD PhD: "Most people who need palliative care are not dying. They are living, and often for a very long time with serious illnesses.... They have a tremendous burden of suffering and caregiver distress, but they are not dying. Palliative care was an answer to that gap. It was recognizing that living with a serious illness nowadays is almost always a chronic disease. No matter how long people have to live, they deserve the same attention to quality of life, treatment of symptoms, management of depression, support for their families, and support for social issues like financing and housing. It should be based on need, not prognosis." -- Diane Meier, MD

Recommended by DeAunne Denmark MD PhD: This is a touching personal narrative that helps us understand the origins of Dr. Meier's compassion.

"Dedicated defender of the beauty of humanity, the senses and of a life well lived to the end, palliative care physician and activist BJ Miller brings his expansive vision to bear on the state of the end of life experience. BJ shares his take on the current situation and offers possible routes for how we might close the gap between intention and action in our search for generative solutions that reshape how we think about illness, dying and caregiving."

Recommended by DeAunne Denmark MD PhD: BJ Miller, MD @ UCSF Palliative Medicine - one of the foremost experts and innovators in the field. "You don't have to spend much time there (Zen Hospice) to realize that the most crucial, and distinctive, piece of the operation is its staff of volunteers. Freed of most medical duties by the nursing staff, the volunteers act almost as existential nurses. They sit with residents and chat, offering their full attention, unencumbered by the turmoil a family member might feel. The volunteers are ordinary people: retired Macy's executives, social workers, bakers, underemployed millennials or kibitzing empty-nesters. Many are practicing Buddhists. Many are not. (Miller isn't.) But Buddhism informs their training. There's an emphasis on accepting suffering, on not getting tripped up by one's own discomfort around it. "You train people not to run away from hard things, not to run away from the suffering of others," Miller explained.

BJ Miller, MD reminds us to consider the fullest view of what it means to be human - from the messy, uncomfortable issues that arise around dying to the delight of being alive in our bodies - as a path to understanding the possibilities available to open to design for the end of life experience.

Recommended by DeAunne Denmark MD PhD: "Enhancing the experience of caregiving by teaching mindfulness and compassion" Zen Caregiving Project is a non-profit organization based in San Francisco, California with over 30 years of experience in practicing and teaching mindfulness-based, compassionate caregiving. We offer courses, workshops, and training for professional, family, clinical, and volunteer caregivers. Through our work, we provide a context for public discussion of caregiving, loss, and death.

This resource is especially meaningful for me. Thank you for sharing it!

"Palliative care is an interprofessional specialty focused on symptom management, quality of life, and relief of distress for patients who are living with serious illness and their families. The UCSF Interprofessional Palliative Care Continuing Education Course (Practice-PC) was created in 2015 to address a workforce shortage that is a key limiting factor in the dissemination of palliative care."

Recommended by DeAunne Denmark MD PhD: Virtual Conference - On Demand - June 16 - November 17, 2020 A wide range of topics will be covered, but all relate to how compassionate care can support goals like workforce well-being, patient experience, safety, quality and innovation, as well as additional content to support caregivers and leaders during this challenging time.

Recommended by DeAunne Denmark MD PhD: Our Mission To put compassion at the heart of healthcare through programs, education and advocacy. Our Vision: A world where all who seek and provide healthcare experience compassion.