Hospice Live Discharge Problems (Research, Video 1:36)

Sometimes people really do leave hospice alive. That may or may not be a good thing. Discharges include patients deciding to resume curative care, improved patient conditions beyond hospice guidelines, or hospices inappropriately using live discharge to avoid costly hospitalizations. Discharges vary among hospices and geographic regions. Connecticut has the lowest rate, and Mississippi has the highest. Not-for-profit hospices and older hospices have lower rates of live discharge.

Not much has been known about how hospice live discharges vary by hospice providers' tax status and chain affiliation. This lack of knowledge prompted research to characterize hospices with high rates of problematic patterns of live discharges. Three hospice-level patterns of live discharges were defined as problematic when the facility rate was at the 90^th percentile or higher. They were the following:

1)  “Burdensome transition” including a high rate of patients discharged, hospitalized, and readmitted to hospice and considered to have a problematic live discharge pattern

2)   Live discharge patterns in the first seven days of a hospice stay

3)   Live discharge after 180 days in hospice

Research results conclude that each proposed problematic pattern of live discharge varied by chain affiliation. For-profit providers without a chain affiliation had a higher rate of burdensome transitions than did for-profit providers in national chains. Not-for-profit providers had the lowest rate of burdensome transitions. Clearly, this problem needs to be continually addressed at governmental levels, particularly in terms of patient care and questionable practices regarding discharging patients to save money or enrolling them to make money.

This video presents reasons why burdensome transitions are exactly what they are called. Healthcare transitions, such as moves from a nursing home to a hospital, can result in medical errors, lack of care coordination, and emotional distress and agitation for persons with advanced dementia. These transitions are not consistent with goals of providing dying patients with comfort care.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Cameras: Should Caregivers Wear Them to Videotape Dementia Behavior? (Research)

One of my favorite quotes is this: “The bear and the rabbit will never agree on how fierce the dog is.” It all really depends on each one’s perspective of the dog. In the above photo, some people will see a duck, while others will see a rabbit. Many may eventually see both. Depending on the questioning, their stories may differ on what they really saw at a particular time. Recently in the news, we have been reading about more police departments investing in cameras for officers to wear while on duty. The purpose is to provide more visual and audio evidence to further validate what really did happen in addition to what eyewitnesses say they saw and heard. 

This leads to a discussion about cameras and caregivers of persons who have dementia. When caregivers describe to healthcare staff the behaviors of those who have dementia, would it be better if they also had a video or photo in addition to their version of what they saw? Some people think this additional description would be beneficial, particularly if caregivers might be biased or unintentionally selective in their own explanation of behaviors.

Research on caregivers and wearable cameras was done to discover how useful it would be if they used camera systems to record 79 events over a total of 140 hours of data captured from 3-7 days. How did the caregivers rate this procedure? While they thought the system was easy to learn to use, even though cumbersome, they had few negative reactions. Overall, the research suggested that caregivers of people with dementia “can and will wear a camera system to reveal their daily caregiving challenges to healthcare providers.”

What do you think about this kind of surveillance? Would you wear a camera as a caregiver? What do you think about this kind of observation from the point of view of the person with dementia?

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Widowed Fathers Raising Children (Research, Video 1:30)

Bertie and Alexandra Wells were married with two children when the rhythm of their lives changed drastically. Alexandra was diagnosed with a rare and aggressive form of breast cancer that raced through their love, leading to a mastectomy, chemotherapy, radiation, and finally death, all within 16 months. Bertie, pictured above reading to his young son and daughter, found himself heartbroken while thrust into a whole new parenting lifestyle. 

Bertie is one of America’s estimated annual 20,000-30,000 widowed fathers raising children. In need of ongoing support as they carry the demanding weight of personal vulnerability and loss, widowed fathers' unique concerns should be addressed by society far more than they are. Maintaining jobs to provide for their families, many widowed fathers suppress their own needs while struggling in silence as everyday dads fostering the well-being of their children.

Widowed fathers’ perspectives are important in determining positive end-of-life practices for families living with terminally ill loved ones. Their views help establish effective coping strategies after mothers have died leaving dependent children. This study, which focuses on those outcomes, included 344 men who identified themselves through an open-access educational website as widowed fathers. They all indicated that their spouses had died from cancer and that they were parenting dependent children. Participants completed surveys including their wives’ cancer history, end-of-life experiences, and their own depression and bereavement. Their views on how parental status may have influenced the end-of-life experiences of mothers with advanced cancer were emphasized. These were the results:

1)  Fathers stated that 38% of mothers had not said goodbye to their children before death, and 26% were not at peace with dying.

2)  Among participants, there were 90% reporting that their spouses were worried about the strain on their children at the end of life.

3)  Fathers who reported clearer prognostic communication between their wives and physicians had lower depression and bereavement scores.

These data clarify the need for more family assistance related to terminal illness and death impacting widowed fathers and their children. Additional research and helpful resources such as books, videos, support groups, counseling, etc. can assist them further in untying knots of grief as they create their new normal.

1) The National Widowers Organization was founded by Sam Feldman whose wife of 53 years lost her year-long battle with cancer. Promoting the development of support groups for men to manage their grief and adjust to new lifestyles, this organization also advocates for research about men's unique needs concerning spousal loss and grief. 

2)  Single Fathers Due to Cancer is located at the University of North Carolina- Chapel Hill. Dr. Donald Rosenstein, director of the UNC Comprehensive Cancer Support Program, started the support group a few years ago with his team, including Dr. Justin Yopp. They meet monthly with child care provided by students. The following video titled “Support for Single Fathers Due to Cancer” features Bruce Ham, a widowed father who shares his story.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog

Healthcare Fears of Being Stereotyped: Older Adult Concerns (Research, Video 3:40)

Stereotypes have a way of showing up in all kinds of circumstances, including those related to healthcare. It’s shocking how threats of numerous stereotypes can impact so many areas of people’s lives. Think about all the stereotypes that can be drawn from just looking at a person (age, race, ethnicity, weight, disability, mannerisms, etc.) or listening to a person (word choices, accents, evasiveness, humor, etc.), and it becomes clearer that many people carry extra burdens with them that present real threats to the kinds of experiences they have in healthcare situations. Too many times, the threats of stereotypes are real. But, even when the threats are not real, do they still impact patient care?

No one should be reduced to being viewed as a group stereotype. Unfortunately, older adults have been blanketed with many negative stereotypes by society. Ageism is alive and well, and they experience it. In addition to other numerous stereotypes, older adults may fear being judged in healthcare contexts on several characteristics. A research study with older adults in the Health and Retirement Study was done to assess the impact of threats of being stereotyped in healthcare situations. 

This study included 1,479 individuals. They were tested on whether healthcare stereotype threats were associated with self-rated health, reported hypertension and depressive symptoms, as well as with healthcare-related outcomes, including physician distrust, dissatisfaction with healthcare, and preventative care use. These were the results:

1)  Seventeen percent of respondents reported threats of healthcare stereotypes with respect to one or more aspects of their identities.

2)  Healthcare stereotype threats were associated with higher physician distrust and dissatisfaction with healthcare, poorer mental and physical health (i.e., self-rated health, hypertension, and depressive symptoms), and lower odds of receiving the influenza vaccine.

This study is the first of its kind. It reveals that people do experience healthcare stereotype threats on the basis of various stigmatized aspects of social identity and that these experiences can be linked with larger health and healthcare-related outcomes. In terms of disparities, keep in mind that the impact of the stereotype threats may be experienced in addition to the impact of real stereotypes they actually do experience in the healthcare arena. The healthcare industry must educate and monitor staff regarding stereotypes in general to improve healthcare-related outcomes and achieve person-centered care for everyone.

In a society where younger people are idolized, many have come to perceive old people as invisible, dependent, and not as valued as the young. This video describes the roots and consequences of ageism in America.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.

Hospice and Nursing Homes Blog