Hospice Chaplains, Spiritual Counselors: Video Interview 6:24

Hospice chaplains and spiritual counselors are available for terminally ill patients and their families as another optional choice to promote quality of life. In recent years, more patients are choosing this service, which has become more flexible in meeting diverse needs, including the needs of those who say they are spiritual but not religious. Trained chaplains bring additional compassion, comfort, and understanding to the death journey, a time when many focus on the meaning of life, their purpose, and general concerns about closure. Of course, patients can still choose counseling from their own personal pastors, priests, and spiritual leaders.

In additional to spiritual counseling, hospice chaplains can also officiate at funerals and memorial services. One of my hospice patients had no family support providing for an end-of-life ritual. The hospice chaplain held a memorial service at the nursing home that included a few nursing home residents, one relative, a friend, and myself. The twelve of us sat in a circle while the chaplain read a spiritual verse. This was followed by each of us commenting on our personal relationship with the deceased. Our death ritual concluded on the front lawn with our singing a spiritual song and the releasing of balloons that the chaplain had brought.

In this video from Community Home Care and Hospice, a hospice chaplain explains what he does, the rewards he receives, and answers many questions people may have regarding his patient-driven spiritual care. He honors one of his patients with special recognition you won’t want to miss.

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

How to Be a Great Hospice Volunteer

How to Be a Great Hospice Volunteer 

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1)   Remember why you serve.

There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.

2)   Believe it’s all win-win.

Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.

3)   Be present.

By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.

4)   Try other doors.

Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.

5)   Know your piece in the puzzle.

Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.

6)   Untie your knots.

There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.

7)   Spread the word.

Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.

8)   Pick up a turtle.

If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.

   

9)   Write death sentences.

Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.

  

10)  Expect rainbow smiles.

Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing moments for you to positively impact lives. When you make those connections happen, rainbow smiles will come.

© Frances Shani Parker

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

Nursing Home Hospice Impact on Certified Nursing Assistant (CNA) Staff (Research, Video 1:56)

Hospice care in nursing homes continues to increase as more people become aware that hospice services are available wherever they live. Back in the 90’s when I first started hospice volunteering, many people told me they thought hospice care was only at private homes or in free-standing hospice facilities. On the negative side, there were those who thought nursing homes would get kickbacks from hospice referrals. Speculation about nursing homes receiving additional staff hours at no cost, which could lead to decreases in nursing home staffing, was mentioned.

What has happened in terms of nursing assistant staffing with the introduction of hospice care in nursing homes? Researchers at Warren Alpert Medical School at Brown University studied this process for several years with these staffing results:

“The introduction of hospice services in a nursing home did not result in statistically significant changes in nursing assistant (CNA) staffing. Instead, increases in hospice volume resulted in small increases in CNA staffing.”

As a hospice volunteer working directly with patients, I had many opportunities to observe and communicate with CNA staff members who were often first responders in meeting resident needs. Many exhibited dedication and genuine care for residents in spite of their own expressed hardships on the job such as low pay, high staff turnover resulting in increased workloads, and lack of appreciation. The following video titled I am a Nursing Assistant shares their caregiving challenges and rewards:

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Ten Steps to Being a Great Hospice Volunteer

Ten Steps to Being a Great Hospice Volunteer

By Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

1)   Remember why you serve.

There’s a reason you feel compelled to enhance lives of the terminally ill. Cherish that inspiration. Move forward committed to an amazing and rewarding healthcare adventure.

2)   Believe it’s all win-win.

Providing end-of-life service is a privilege, not a calling to be a savior. You and those you support come together in relationships of mutual healing and growth. Honor your win-win journey.

3)   Be present.

By all means, show up. But be present with patients after you arrive. Evaluate appearances, behaviors, surroundings, and interactions with others. Listen with your heart. Even silence speaks. Really try to understand living from their perspectives. Focus on advocacy for improving their quality of life.

4)   Try other doors.

Patients will have challenges such as dementia that may not respond to your usual front-door communication. Try other doors and even windows. Obstacles are enrichment opportunities in your partnerships with patients. Touch, music, pictures, stories, and fantasies are a few entry points. Let patients help you navigate your way into their world.

5)   Know your piece in the puzzle.

 

Adherence to rules of protocol and professional ethics should be routine. Be aware of boundaries such as confidentiality regarding yourself, your patients, and their loved ones. Follow guidelines of your hospice organization, and seek help when needed.

6)   Untie your knots.

There may be times of doubt, confusion, sadness, and guilt. These are normal knots of the caregiving process. Untie them by seeking support for your total well-being. Maintain proper rest, nutrition, exercise, and balance in your life. Do your best. Don’t be surprised when you discover reasons to kiss yourself.

7)   Spread the word.

Be knowledgeable about hospice and palliative care. Share information so others can benefit from these specialized areas of healthcare. Encourage involvement in hospice and palliative care career and service activities.

8)   Pick up a turtle.

 

If you see a turtle sitting on a fence post, you know somebody helped to put it there. Be on the lookout for turtles aiming for fence posts. Be a role model for other volunteers. Participate in organizations, conferences, workshops, and discussion groups where you can share best practices while learning new ideas.

   

       9)   Write death sentences.

Death will come no matter how often you avoid it or wrestle it to the ground. Have your advance directives, finances, and property in legal order. Urge others to do the same. Don’t burden loved ones later with important decisions you can record now. As you unfasten yourself from this life, be satisfied knowing your death sentences will be carried out according to your wishes.

  

    10)  Expect rainbow smiles.

 

Rainbow smiles hug you so tightly you can feel ribs of joy press against your essence. Hospice volunteering provides ongoing experiences for you to positively impact lives. When you do, rainbow smiles will come.

© Frances Shani Parker

You can read about my personal journey in becoming a hospice volunteer without realizing I was one here: https://www.linkedin.com/pulse/hospice-volunteer-me-frances-shani-parker?trk=mp-author-card

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

Reluctant End-of-Life Caregivers: Would You Do It Again? (Research, Video 3:10)

Most people don’t set out to become caregivers. Some enjoy nurturing loved ones and find the caregiving experience challenging, but rewarding. Few people talk about caregivers who feel depressed, guilty, trapped in a hole with no way out except the death of persons in their care. Maybe they were the only sibling living near the parent, the only relative or friend with resources to provide care, or the only person willing to step up when others refused. Whatever their reasons, they became caregivers reluctantly, never fully embracing the responsibility, and made the most of the situation. If they had a choice, would they do it again? Some say they would not.

In a study reported in the “Journal of Pain and Symptom Management,” factors associated with an unwillingness to become caregivers again were reviewed. Former caregivers of palliative care patients were interviewed. Comparisons between those who would do caregiving again and those who would not were made with these results:

1)   One in 13 (7.4%) former caregivers indicated that they would not provide such care again.

2)   One in six (16.5%) would only "probably care again."

3)   Increasing age and lower levels of education controlling for spousal relationship lessen the willingness to care again.

4)   Despite most active caregivers being willing to provide care again, a

proportion would not.

This Visiting Nurse Service of New York video titled “How to Relieve Stress When Caring for an Aging Parent or Spouse” presents ways to cope with caregiver stress.

Frances Shani Parker, Author

Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback at many booksellers and in e-book form at Amazon and Barnes and Noble booksellers.

Hospice and Nursing Homes Blog

Hospice-Palliative Care Diversity Outreach: Asian Culture (Chinese American Video 1:32)

Meeting the cultural needs and preferences (ethnic and religious beliefs, values, and practices) of hospice-palliative care patients is an important part of quality health care. People view the world through their cultures and values. To ignore this fact and impose one’s own culture and values on others caters to miscommunication and alienation. With respect and sensitivity, bridges can be built that help people connect at human levels, regardless of their differences. The availability of more language interpreters at healthcare institutions can facilitate this communication and bonding. Ongoing education on the culture and traditions of various populations, along with the understanding that varied beliefs exist within each group, must be increased throughout the healthcare system to improve service to diverse groups.

Many Asians prefer family caregiving of their aging, terminally ill relatives. In addition to being reluctant to place their elders in nursing homes for hospice care, they may also be reluctant to discuss specifics about illnesses with those in their care to keep them hopeful and without worry. Some Asian cultures consider direct eye contact, particularly with someone considered a superior to be inappropriate. Healthcare providers should gather more knowledge of Asian culture, including input from Asians, in order to promote benefits of hospice and palliative care.

In the following video, Nellie Kwan, a hospice clinical supervisor who works for Self-Help Hospice in San Francisco, describes cultural concerns regarding end-of-life care and Chinese Americans. According to her, most Chinese Americans do not understand hospice at all. This video is part of the Hospice Foundation of America “HFA Cares” series:

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Palliative Care Professionals Change Through Shared Stories (Research, Hospice Video 2:16)

Never underestimate secondhand life experiences. I know how someone else’s story can grab me by the collar, drag me into a clear day on a stormy night. When writing for others, I have wandered through high weeds of words, while seeking a path of truth behind the noise of my thoughts. True stories sometimes come drenched in life-changing powers. I wish more people would tell and listen to stories the way children do with wide-eyed openness for learning. That’s why I am pleased to report this research about palliative care professionals telling true stories about their work.

Reported in the “Journal of Interprofessional Care,” this research consisted of a series of six interprofessional palliative care meetings held in facilitated small groups. The 28 participants, which included doctors, nurses, social workers, and emergency care practitioners shared stories about their professional experiences. Evaluations of the meetings were done via telephone interviews with 19 of the participants reporting. Findings resulting from their shared discussions included this statement:

“Five months after the end of the course, many participants described changed professional behavior which they believed led to improved patient outcomes.”

Now, that was some great storytelling!

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

“Hospice and Nursing Homes Blog”

Palliative and Hospice Care for Latinos

By the year 2050, Latinos, who currently make up 15 % of America’s population, will account for 30 % of the population.  Latinos are a diverse population with unique healthcare end-of-life needs that must be addressed if they are to receive quality care everyone deserves. Many have difficulty as immigrants adjusting in America to the dominant English language and Anglo-centric culture.

Non-Latino and non-Spanish-speaking healthcare workers must make every effort to communicate with Latinos and eliminate cultural misunderstandings that can negatively impact their healthcare. In terms of end-of-life care, the following challenges of immigrants must be addressed:

1) Geographic distance as well as political and economic realities which separate patients from their families

2) Undocumented immigrants who are frequently uninsured and fearful of deportation

3) Language and literacy barriers

4) Concerns about discrimination, culture, religion and spiritual influences

Professional interpreters can be helpful in alleviating barriers in communication. Ongoing staff development in working with diverse populations is also important. Everyone is entitled to quality palliative and hospice care when it is needed. You can read more here about palliative care for Latino patients and their families.

Frances Shani Parker, Author

"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

 “Hospice and Nursing Homes Blog”

My Nursing Home Patient Leaves Hospice Care

Whenever I speak to groups and mention that one of my patients was released from hospice care, audience members seem surprised. This usually happens when I tell Raynell’s story. Raynell, my diabetic hospice patient with dementia, shared a room with four other patients at the nursing home. Her roommates included an imaginary admirer named Robert, whom she loved like the devil loves holy water. Conversing with Raynell required that I drop to the floor periodically and search for Robert under her bed. This was preceded by her screaming, “Get him! He’s going under the bed!” after he (affectionately?) pinched her tingling diabetic legs. But one day, she surprised me with talk about leaving hospice care and the nursing home:

Excerpt from "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”

Raynell requested my help by saying, “I was wondering if you could help me find another apartment. I’ve been thinking about looking for a new place to stay, maybe a place closer to where I used to live. This apartment building is too noisy. Just close your eyes and listen to all the talking, buzzers, and everything. People come into my place without even knocking. They just walk right in and go through my closet and drawers. It’s not right. Three ladies even moved in with me when I wasn’t looking. Now, I can’t get them out.”

“Whoa! That’s a surprise! I didn’t know you wanted to leave here. Are you sure moving is the best thing to do while you’re not feeling well?”

“Lately, I’m feeling much better. I need a change. Even Robert had to leave, so you know it’s bad. But I’m very glad about that. He’s gone to live in California. I don’t think he’ll be coming back again.”

“A lot sure has happened since I visited you last week. You never said you wanted to move before or that the other people who live here bothered you so much. All this really shocks me.”

I thought about this interesting conversation a while. It was the first time Raynell ever mentioned moving to an apartment and, even more astonishing, the first time she ever said Robert wasn’t hiding under her bed. Two weeks later, she was released from hospice care because her health really had improved. She moved to another nursing home near her son’s house. I guess Robert knew his time was almost up and decided to leave before he got left.

© Frances Shani Parker

Yes, it’s rare, but patients are released from hospice care. Some die within months of leaving, and some live at home or remain in nursing homes. Consider that with various diseases causing the need for hospice care, it is difficult to predict someone’s death with accuracy. Also, receiving quality healthcare and support from others can improve a patient's health. And when an imaginary admirer named Robert knows it’s time to leave, the patient may be moving in that direction, too.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”

Hospice Volunteer Book Review: Meeting the Death Monster in Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

In America, death is still a terminally ill taboo in great need of palliative-hospice care. Too many people avoid talking, hearing, writing, or reading about the end of life. As an author and consultant on hospice and eldercare, I have been told on several occasions that the topic is just too “depressing” or too “final.” Several months ago, this reluctance to deal with death visited a friendship. I had given a casual friend a copy of my book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes. Not knowing her feelings about death, I decided not to talk to her about the book unless she brought it up. Recently, she did. I’ll call her Alice.

Alice works in the healthcare profession, so I was somewhat surprised to discover that she feels strongly that death, a frightening stalker of her dreams, is her enemy. She shared that death has stolen too many of her loved ones, including pets. She helplessly dreads the thought of losing even more. My own acceptance of death, which comes across clearly in my conversations and writings, seems inappropriate to her. She finds my views too accepting of her enemy, too casual a regard for life. While she says she would consider hospice care along with other options, she admits she could never be even an average hospice volunteer.

What is her feedback regarding my book? She loves the patients’ stories and my comments about interacting with various people in the nursing home world. The original poetry, which concludes each chapter and probably nudges her own poetic abilities, pleases her. She finds the discussions on caregiving, dementia, death rituals, and bereavement informative. The explanations about school-nursing home partnerships and the ideal nursing home described in the chapter “Baby Boomer Haven” are particularly enjoyable. But she dislikes emphatically the premise that there is a “right” way to die.

I am not sure if her hostility toward death has changed much, but I hope that this book meeting with what she refers to as “the monster” has impacted her positively on some level. Those of us who embrace the topic of death will continue to be viewed with dismay by those who deal with mortality through avoidance and resignation of themselves and loved ones as victims of death’s malicious powers.

Alice’s revelations reinforce the importance of promoting death as a natural part of life that should be experienced with dignity by everyone. One person at a time, I believe conversations and writings enhance lives of the naysayers by slowly empowering them with death acceptance, even as they resist the message. I appreciate Alice’s frankness in sharing death’s painful presence in her life and in giving feedback on my book. Most of all, I commend her willingness to become a ball of courage rolling into the high weeds where the death monster lives.

You can read book endorsements, excerpts, and more here at my website.

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

Hospice Care Perceptions of Nursing Home Staff

In my book “Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes,” there is a chapter titled “Healthier Hospice.” This chapter gives detailed explanations, based on my research and experiences as a hospice volunteer, regarding ways to improve hospice services in general. Included are variables that can improve hospice implementation in nursing homes. Nursing home staff members who are focused on curing patients may not embrace the hospice philosophy of non-curative care. It is critical that they commit to enhancing and maintaining their expertise in certain hospice practices.

The quality of end-of-life care for any patient depends on the context in which the care is given. In the context of a nursing home, perceptions of staff members regarding the hospice philosophy and the implementation of that philosophy greatly impact a potential hospice patients’ experience. This includes the referral or non-referral of patients to hospice care and the timing of those referrals.

In a study at Southern Illinois University Edwardsville, an understanding of factors influencing hospice referrals, nonreferrals, and timing of referrals was researched. Cross sections of staff members from seven nursing homes and two hospices were interviewed with the following results:

1) Nursing home staff members’ recognition of terminal decline, beliefs about hospice, and the initiatives they took “significantly influenced” patients’ referrals to hospice care and the timing of their referrals.

2) When death was perceived as unexpected (familiar signs not recognized by staff members), hospice referrals were delayed.

3) When nursing home staff members believed that hospice care was only for a crisis at the end of life or that hospice care did not add to nursing home care, hospice referrals were delayed.

4) Patients received longer hospice care when staff members believed hospice care complemented nursing home care and when staff members took the initiative to raise the option of hospice care.

This study confirms how important ongoing hospice training is for nursing home staff members. I emphasize ongoing because, in my experience as a hospice volunteer, regular staff turnover demands this. Without ongoing training, the quality of end-of-life care for potential hospice patients is jeopardized.

You can read more details about this important study here.

Frances Shani Parker, Author
"Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes”
“Hospice and Nursing Homes Blog”