“Nursing homes must be innovators”

Ageless Voice interviews Dr Carol Long who is a principal at Capstone Healthcare and co-director, Palliative Care for Advanced Dementia, Beatitudes Campus on her thoughts on end-of-life care or palliative care. She is also an adjunct faculty, Arizona State University College of Nursing and Healthcare Innovation, Phoenix, Arizona, US:


With the growing population ageing and the importance here for end-of-life care or palliative care at home/nursing home, can you share some innovative approaches that you have seen that help support dying elderly as well as their families?

The demographics of ageing worldwide dictates that healthcare professionals pay more attention to the care of older adults who live their final days in nursing homes or other residential settings. By the year 2030 in the US, as baby boomers reach the age of 65, there will be 70 million older adults and by 2050, 20 percent of the total US population will be age 65 and older. In addition, 70 percent of deaths in America are in those age 65 years of age and older. For many, their healthcare needs are complex; with many suffering multiple-disabling medical conditions in their final years. Of interest is data that 33 percent of residents in nursing homes are most likely to die there and as one ages, there is an increased likelihood that nursing homes will become their final, permanent residence (National Center for Health Statistics, 2011). Many die in hospitals or nursing homes where palliative care may not be available. Nursing home staff require training in end-of-life care principles.

The End-of-Life Nursing Education Consortium (ELNEC) has been on the forefront of change with training in palliative care principles across all healthcare settings. Specifically, the ELNEC-Geriatric Train-the-Trainer provides education and training for nursing staff who work in nursing home settings. Focused education includes assessing and addressing pain and non-pain symptoms; identifying goals of care; incorporating ethical principles; culture and spiritual considerations in the care plan; developing communication skills; understanding loss, grief and bereavement; and preparation and care at the time of death. Nurses who complete ELNEC can provide training in their own employment settings and create change by improving care practices in their facility. (ELNEC-Geriatric Training and ELNEC-Geriatric Train-the-Trainer was provided at Hua Mei Training Academy.) For example, at Beatitudes Campus, a “Campaign against Pain” was initiated to help nurses provide pain relief for people residing in the Health Care Center, which is a skilled nursing facility.

A second effort is the Palliative Care for Advanced Dementia programme at Beatitudes Campus which makes comfort-care the No 1 goal in all care that is provided for persons with dementia. Since dementia is a terminal illness, caregiving staff direct all of their attention to comfort practices, ranging from full liberalisation of diets to aggressive pain management to integrative approaches that include pet therapy, massages and intergenerational activities with children. There are no physical restraints and caregiving staff abandon the usual nursing home task schedule to one that is based on a person’s own individual needs. For example, there are no shower schedules and dining is ‘on demand’.

Thus, nursing homes must be innovators in supporting the older adult and their families who are approaching the final years and days of their lives to assure a ‘good death’. Finally, nursing homes need to be person-directed and comfort-focused in all aspects of care.


Expense then comes to mind. So how can such approaches be both affordable and sustainable?

All of the above mentioned approaches are affordable and sustainable. When comfort care is the focus, caregiving staff become totally invested in assuring that older adults under their care have a positive experience in their final years. We completed a cost study that examined the cost of care of one facility that undertook the palliative care training programme and it was found that there was less turnover of nursing home staff. In another study, the incidence of moderate to severe pain was dramatically reduced since nursing home staff learned evidence-based approaches to comfort that included pharmacologic and non-pharmacologic treatment strategies. When caregiving staff witness resident comfort and what they can do to promote it, it is empowering and affirming.


Can you share what are some challenges in the area of palliative care? Would staff also be of concern? Are volunteers an option?

One of the greatest challenges in palliative care today is recognition of comfort-focused care in nursing home settings. In the US, the Centers for Medicare and Medicaid Services (CMS), initiated new guidance to surveyors regarding three F-Tags or regulations that are effective November 1, 2012. These new regulatory measures include greater attention to advance directives so that each resident in a care facility has the right to formulate advance directives and that the facility has a responsibility to execute the directives and to implement advanced care planning. The second measure focuses on quality of care with an extensive new section regarding care for residents approaching end-of-life; outlining facility responsibility regarding the provision of treatment choices and palliative care. The third area is the use of feeding tubes that emphasises the safe use of feeding tubes and the appropriate rationale for the use of feeding tubes, including technical and nutritional aspects of feeding tube use.

These are recent changes in the regulatory process for nursing homes in the US and nursing home staff need to begin or enhance existing palliative care strategies. One mechanism would be to include more volunteer staff, much like the current model of hospice care in the US and develop a mission, philosophy and training programme in palliative care.


Can you share how the US handles the issue of palliative care?

Palliative care in the US continues to evolve, emanating from the hospice model of care with patients cared for in home and inpatient settings. Now, there is increasing attention paid to moving hospice or end-of-life principles ‘upstream’ and earlier on such that individuals have access to palliative care while receiving disease-modifying treatment or care. Thus, comfort care is introduced earlier on in the healthcare delivery system and particularly for people encountering a slow decline or lingering illness/dying trajectory. Research in this area is making great strides with evidence that palliative care improves quality of life, reduces depression and improves the longevity of life for patients with advanced cancer. This is a very promising development in palliative care and more research is being conducted to determine the quality of care and cost benefits of earlier initiation of palliative care.


Can you share some do’s and don’t's of advanced care planning?

Advance care planning is all about ascertaining a  person’s goals of care; then documenting it in a formal way so that the healthcare power of attorney (I think called ‘donee’ in Singapore) can carry out a person’s directives when they are no longer able to do so. A major part of advance care planning is that people (of all ages) are provided the opportunity to actively participate in their own care and stipulate measures that the person wants or does not want when they are no longer able to give consent. As for older adults, one approach that is taught in ELNEC training is to explore the older person’s values, beliefs and values. This open discussion is not about the healthcare professional’s values; it is about asking older adults to think about the care they would like to receive under certain conditions, such as a disabling stroke or terminal illness. Another approach is to outline situations and treatment options that the older adult is likely to encounter given their medical condition(s). For example, persons with advanced dementia will have progressive difficulty with eating and swallowing, thus a feeding tube may be a consideration. Determining and clarifying the goals of care help the older adult and their families/decision-makers become fully informed in making these decisions with the potential benefits and burdens one is likely to encounter. The “Five Wishes” (www.agingwithdignity.org) is a document that helps the advance care planning discussion with a person who is completing their advance directives:

  1. The person I want to make decisions if I cannot.
  2. The kind of medical treatment I want or don’t want.
  3. How comfortable I want to be.
  4. How I want people to treat me.
  5. When I want my loved ones to know.

These preferences are discussed and then documented in a written form. However, it is very important that the person who will carry out the specifications and really knows what the person wants so that these wishes are respected and honoured.


What are some advice would you give to various countries’ Governments on how to deal with end-of-life issues?

This is a difficult question since many countries today are examining various palliative care models or developing and executing a national plan. I would ask that each country consider palliative care as a logical and normal occurrence and consideration in the circle of life and that palliative care become an integral part of the healthcare delivery system and not just the last weeks, days or hours of someone’s precious life. I would ask that all healthcare professionals receive palliative and end-of-life care training in their basic educational programme with a major emphasis in comfort-focused care and communication skills. Finally, end-of-life care issues cannot be addressed without the incorporation of advance care planning and help for older adults to be active, knowledgeable care partners in their end-of-life journey, should they so desire.


What is the next future of palliative care?

In the US, palliative care has a bright future if we continue to support ethical principles so very engrained in American culture. However, the end-of-life journey is an individual as is every death. Thus, healthcare professionals need to advocate for palliative care that supports quality of life or promotion of a person’s physical, psychological, social and spiritual well-being. An interdisciplinary team of nurses, physicians, care assistants, social workers, pastoral care services, therapists, volunteers and bereavement counselors need to provide care that is consistent with each person’s own beliefs, values and wishes. This is the essence of palliative care.  Finally, the “National Consensus Project for Quality Palliative Care” and the “National Quality Forum” guide palliative care preferred practices across all healthcare settings in the US. These guidelines help in supporting quality of care in palliative and end-of-life care across healthcare settings.


(** PICTURE CREDIT: AWWA Centre for Caregivers)



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