Tag Archives: elder care

Book Reviews and News, death and dying, elder care, hospice care, palliative care

An RN’s View From the Front Lines of Care

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When her children were young, Theresa Brown, RN, made a mid-career change: from English professor at Tufts University to nursing, and chose to specialize in medical oncology. We should all be glad she did, because she has chronicled her experiences – and by extension, illuminated some of the most pressing issues and challenges in our health care system – in two excellent books as well as in personal essays in The New York Times. And she does it with clarity, insight, humor and understated eloquence.TheShiftcover

Her voice is important because nursing truly is the heart of care for the ill. No other health professionals spend as much time providing hands-on care for the sick than nurses. Our health care system is increasingly complex, technology-laden and hyper-specialized. So the need for a humanistic perspective from those who are on the front lines has never been more pressing.

I had the great pleasure of interviewing Theresa recently, following her book tour for The Shift: One Nurse, Twelve Hours, Four Patients’ Lives. The book focuses on a day in her life in the oncology ward of a Pittsburgh teaching hospital; she subsequently left that position and currently works as a hospice nurse, visiting people in their homes.

Just a couple of highlights of our conversation:

Theresa told me that she is comfortable in her current role as a home hospice nurse. In fact, she said, one reason she made this switch was that she always likes to learn new things and wanted particularly to learn about how the kind of care provided for patients at home might ultimately be transferred to the hospital setting. Care that offers more dignity and privacy for patients, such as letting patients sleep when they need to; or even wear their own clothes; and making it easier for family, friends and caregivers to visit any time and stay overnight if need be.

“It would be great to go back to a hospital and say, how can we make things better?” she said. “Creating a balance of comfort and quality care.” Even making the decision not to wake people in the middle of the night would be an enormous change, she pointed out.

We also talked about the ideal of the team approach in palliative and hospice care, where physicians and nurses work closely together in an atmosphere of mutual respect. (I’ve interviewed a number of such teams and, like proverbial married couples, they often do finish each other’s sentences.) In a hospital setting, Theresa noted, “communication between physicians and RNs often is not what it should be.”

She’d like to see more inter-professional training focusing on better communications so that “we could view each other as people and understand each other’s roles and responsibilities, and the pressures on each of us.”

There is no doubt in my mind that Theresa will keep learning – and educating us along the way – and that she’ll continue to make a difference in reaching the goal of improving patient care. In the meantime, you can order books, read her columns or join her mailing list at http://www.theresabrownrn.com.

 

 

 

 

 

 

 

 

elder care, long-term care, nursing homes

“Just Shoot Me” Isn’t a Plan

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The Leonard Florence Center for Living, Chelsea, MA
The Leonard Florence Center for Living, Chelsea, MA

How often have you shuddered at the prospect of being terribly frail, living in a nursing home, and then said to your spouse, your kids, your partner, your close friends, “If I ever get like that, just shoot me?” I’ll admit to having said that, myself, on a few occasions.

The fact is, at some point, most of us are going to need some kind of assistance at some point in late life. Boomers may not have the luxury that our parents did, of being tended by adult children or other family members. Families may live too far from one another to enable that day-to-day caregiving. Many boomers – including a sizable LGBT population – do not have children to depend on at all. And whether in future years there will be a sufficient number of skilled home health aides to assist us in our own homes remains an open question.

The good news is that in the course of researching my book, “Last Comforts: Notes From the Forefront of Late-Life Care,” I learned that there are viable alternatives to conventional nursing homes and that they focus more on “home” than on “nursing” in design, operation and management.

Sometimes they’re called “households” or “small houses.” The Green House is one of the better-known variations on the theme of alternative nursing facilities. (www.thegreenhouseproject.org) Instead of a nursing station dominating a floor, a kitchen and common dining and living areas cater to residents who have their own bedrooms and bathrooms. A floor – often called a “neighborhood” — might include 10 to 20 bedrooms. These homes are distinguished for their person-centered care. So, residents’ own preferences dictate their schedules – that is, they can awaken when they want, eat when they want, spend time how they want to. Aides may be referred to as “universal workers,” and are given more responsibilities (and training) than aides in conventional nursing homes.

The nearly 95,000-square-foot Leonard Florence Center for Living in Chelsea, Massachusetts, which has been open since 2010, is a case in point. (www.chelseajewish.org) It cares for 100 residents in 10 “houses” (its term for “neighborhood”) of 10 people apiece. Three of the houses serve people who need short-term rehabilitation. One of the houses serves people living with ALS; another serves people with multiple sclerosis (MS).

The building’s first floor is its “Main Street,” with a bakery, deli, spa and chapel; each house also has its own communal area for games, social gatherings and other events. Each house also offers made-to-order Kosher meals; menus are designed jointly with residents and staff.

There are roughly 15,500 nursing homes in the U.S. that serve about 1.4 million residents at any given time; “household” style nursing homes that embrace culture change currently represent a very small fraction of the total number of long-term care residences in this country. So the question that arises is: Can these models grow substantially over the next 20 years so that we will come to expect this level of care as the norm? The nonprofit sector has led the way in this arena. It’s time for the private sector, which accounts for two-thirds of the nursing facilities in the country, to pay attention.

elder care, palliative care

What Palliative Care Should Look Like

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PixabayholdinghandsSurprisingly, many people do not know what palliative care is despite its great strides in recent years. A Consumer Reports survey of more than 2,000 adults, for example, showed that 61 percent had never heard of palliative care.

As the population ages and the demand for palliative care grows, the ability to assess quality throughout the country and across care settings is increasingly important, as Dr. Joseph Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM) and co-chair of its Measuring What Matters Clinical User Panel explained. And because there has been “no consistency regarding which measures are required by various groups, from accrediting organizations to payers,” AAHPM and the Hospice and Palliative Nurses Association (HPNA) came up with “measuring what matters” quality indicators.

Moreover, he said, “there has not been enough focus on cultural sensitivity and social supports. The quality indicators represent a small set of measures to use right now in hospice and palliative care because they are meaningful to patients and have a real impact on them.”

These measures are not mandatory. But if you are seriously ill, or taking care of someone who is, this is the kind of care you should look for. The measures call for:

  1. A comprehensive assessment (physical, psychological, social, spiritual and functional) soon after admission.
  2. Screening for pain, shortness of breath, nausea and constipation during the admission visit.
  3. If you screen positive for at least moderate pain, you should receive treatment (medication or other) within 24 hours.
  4. Patients with advanced or life-threatening illness should be screened for shortness of breath and, if positive, to at least a moderate degree, have a plan to manage it.
  5. Engaging in a documented discussion regarding emotional needs.
  6. Hospice patients should have a documented discussion of spiritual concerns or preference not to discuss them.
  7. Documentation of the surrogate decision-maker’s name (such as the person who has health care power of attorney) and contact information, or absence of a surrogate.
  8. Documentation of your preferences for life-sustaining treatments.
  9. Vulnerable elders with documented preferences to withhold or withdraw life-sustaining treatments should have their preferences followed.
  10. You or your family or your caregivers should be asked about your experience of care using a relevant survey.

 

 

death and dying, dementia care, elder care, hospice care, hospice volunteering, palliative care

Living Well to the End

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Last Comforts

old-people-616718_1280Did you know that November is National Hospice and Palliative Care Month? It is, thanks to the efforts of the National Hospice and Palliative Care Organization. It’s a month devoted to broadening public awareness about the outstanding and much-needed care that hospice organizations provide for the very ill and their caregivers.

So I thought I’d do my part. I’m excited to announce the upcoming publication of my book, “Last Comforts: Notes From the Forefront of Late-Life Care.” Why did I write this book and start this blog?

I was drawn to hospice care because its caring and profoundly respectful philosophy and practice offers physical and emotional comfort, support and kindness to the dying and their families. My family experienced that first-hand with my mother’s last illness, a stark contrast five years after my father’s more conventional medicalized, nightmarish last months. So when I had an opportunity to sign on for hospice volunteer training at Holy Name Medical Center, I took it.

“Last Comforts” was born when one nagging question kept arising early in my journey as a hospice volunteer. Why were people coming into hospice care so late in the course of their illness? That question led to many others that rippled out beyond hospice care. Are there better alternatives to conventional skilled nursing home operations? How are physicians and nurses educated about advanced illness and end-of-life care? What are more effective ways of providing dementia care? What are the unique challenges of minority and LGBT people? What is the role of popular media in our death-denying culture? What has been the impact of public policy decisions about palliative and hospice care?

The book is part memoir of lessons learned throughout my experiences with patients and families as a hospice volunteer; part reporting about the remarkable pathfinders and programs in palliative and late-life care; and part call to action. I  encourage readers – particularly her fellow baby boomers — not only to make their wishes and goals clear to friends and family, but also to become advocates for better care in the broader community.

It’s no secret that care at the end of people’s lives right now is mostly fragmented, uncoordinated, often futile and unsustainable. But without question, it can be managed far better for those who are ill as well as for their caregivers. I’m hoping that “Last Comforts” – and this blog — will help shed light on how we can help make that happen.