Win-Win Hospice Volunteering

By Frances Shani Parker

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 improvement. 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 life from their perspectives. Focus on advocacy for improving their quality of living.

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 own 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, author of Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes

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

Becoming Dead Wrong at End of Life (Research, Video 4:10)

“End of life and all my wishes go unheard” may be thoughts of numerous patients who feel their death is being prolonged unnecessarily. One example is the admittance of patients who have Do Not Resuscitate (DNR) status to the intensive care unit (ICU). Many consider this to be a potential misallocation of limited resources to patients who may neither need nor want intensive care. A review of patients who had a valid DNR status at the time they were admitted to an ICU in a single hospital over an eighteen-month period brings more clarity to these situations.

Results indicated that patients who have DNR status and are admitted to the ICU have a higher mortality than other ICU patients. Those who survive have a high likelihood of being discharged to hospice or a post-acute care facility. The value of intensive intervention for these patients is not supported by these results. In addition, only a minority of these patients were seen by palliative care and chaplain teams, services which the literature supports as valuable for DNR patients. This study supports the need for less expensive and less intensive but more appropriate resources for patients and families who have chosen DNR status.

Note: Do Not Resuscitate (DNR) forms are ignored sometimes for several reasons: Advance directives are not available. A healthcare provider simply ignores request. One doctor has a copy, but not another doctor. Ineffective proxies don't speak up and advocate for what the patient wants. Family members disagree and interfere with what patient wants. Administrative errors are in the paperwork. Emergency workers are not aware of DNR documentation patient completed. A patient's zip code, race, age, etc. can even be factors. 

Be sure your advance directives (DNR, etc. forms) are done. Have them entered into all electronic health records. Tell loved ones your wishes, and make sure your proxy and other proactive advocates for you have personal copies to present when needed. When you can't speak for yourself, you need someone to speak up strongly for your rights. 

The following rap video based on “Love the Way You Lie” by Eminem and Rihanna is titled  “Ain’t the Way to Die” with lyrics by ZDoggMD (Dr. Zubin Damania) and Dr. Harry Duh. Among many receiving thanks are the residents and staff of the University of Nevada School of Medicine, along with palliative care, hospice, and end-of-life providers around the world. Lyrics are included below the video.

“Ain’t the Way to Die” 
Lyrics by ZDoggMD (Dr. Zubin Damania) and Dr. Harry Duh

Just gonna stand there and watch me burn.
End of life and all my wishes go unheard.
They just prolong me and don’t ask why.
It’s not right because this ain’t the way to die, ain’t the way to die.

Patient:

I can’t tell you what I really want.
You can only guess what it feels like.
And right now it’s a steel knife in my windpipe.
I can’t breathe but ya still fight ‘cause ya can fight.
Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate.
I’m like a pincushion, I hate it, the more I suffer
I suffocate.
And right before I’m about to die, you resuscitate me.
You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die

Doctor:

You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em?
Be at peace cause you miss ‘em already and they ain’t gone.
Beep beep, the ventilator alarms.
I swore I’d never harm ‘em, never do nothing to hurt ‘em.
Hippocratic oath primum non nocere now I’m forced just to torture ‘em.
They push full code. No one knows what his wishes were.
His sister heard him say once, “I don’t wanna be a vegetable.”
But no one agrees in the family. His caregiver Kate
Wants him comfort care. But Aunt Claire lives so far away
That her guilt eats her like cancer.
So she answers, “Wait! I think he’ll wake!”
Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain.
Critical care just hypocritical when it’s so insane.
But they insist I shock his heart again so I persist.
Guess that’s why they say that love is pain.

Just gonna stand there and watch me burn.
End of life and all my wishes go unheard.
They just prolong me and don’t ask why.
It’s my right to choose the way that I should die,
The way that I should die. 

End-of-Life Preferences: Do Doctors and Surrogates Even DiscussThem? Read research about this here.

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

Barriers and Benefits of End-of-Life Discussions with Doctors (Video 1:56 mins.)

Unless we are sure we will never experience physical death, we should all take advantage of preparing for the inevitable long before illness even comes. Not having productive discussions about end-of-life options hinders opportunities to make informed choices, including the choice of hospice care. However, patients’ reluctance to discuss end-of-life options is not the only barrier to their receiving hospice care. As this research shows, doctors can play an important role in delaying hospice discussions that provide benefits to patients and their families:

In a two-year experiment involving interviews with 215 elderly, terminally ill patients, Yale University Medical School researchers determined that factors most strongly associated with hospice discussions were clinicians' estimate of and certainty about patient life expectancy. Unfortunately, clinicians were unable to anticipate the deaths of a considerable portion of patients (40%). Results concluded that, ultimately, “patients' use of hospice, relies largely on clinician estimates of patient life expectancy and the predictability of disease course.” This is another reason why patients should finalize their end-of-life care wishes in writing well in advance. You can read more here about this research on determining hospice discussion.

What are benefits of having end-of life discussions with doctors? This video, which refers to a study at Boston’s Dana-Farber Cancer Institute, shows how these conversations with doctors promote dignified death journeys that help patients and their families.

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