The big day has come! The community will get a very intimate look at hospice care tonight at 7 p.m., when Nashville Public Television (NPT-Channel 8 in Middle Tennessee) airs A Place Called Alive. This one-hour documentary film tells the stories of seven terminally ill patients, their families, and their Alive Hospice caregivers. We hope you’ll tune in!

Lisa Graham

“You want me to do what?” That’s about the way I felt when I first heard about a documentary film about Alive Hospice.

There was a patient being featured in the film who was leaving Alive Hospice Residence Nashville and getting her own apartment, and I became her home-care nurse. Thus, I was asked to be part of the documentary, A Place Called Alive. (Blogmaster’s Note: A Place Called Alive will be aired on Nashville Public Television, NPT-Channel 8, on Feb 26 at 7 p.m.) 

I was filmed visiting my new patient at her new apartment. Then, I actually had a cameraman travel in the car with me as I went about making visits. It was a little challenging at times to keep from feeling nervous or self conscious (thinking, “I must look so fat” or “I must sound so country”). But Van Grafton, the cameraman, was wonderful. He was very down to earth and friendly.

I am frequently privileged to take new Alive Hospice nurses around with me as I visit my patients. I love being able to show them what being a hospice nurse is really about. I love showing them what a difference we can make in patients’ lives with symptom management and the interdisciplinary team approach hospice brings. I love showing them the love we’re immersed in as we enter patients’ homes and lives. So, any time I would get the thought “Oh, my gosh, there’s a camera on me!” I would immediately think, “I’m just showing Van around like a new employee. I want to make sure he understands hospice.”

All in all it was a great experience. The film’s director and producer, Erie Chapman (who recently retired as CEO of the Baptist Healing Trust), is the cream of the crop when it comes to promoting love and care. He went exceedingly above and beyond and did a great job producing the film. He did it with radical loving care!

I hope a lot of folks watch the film. I hope families and friends watch so that when there is a need, they will remember they don’t have to go it alone. I hope patients watch it and realize comfort is available. I hope physicians and medical persons watch and remember that they have an amazing gift to give their beloved patients in referring them to hospice. I hope government officials watch and realize that everyone deserves the benefit of hospice when they come to a place that is too tough to go alone. I love hospice, and I am especially partial to this place called Alive!

Lisa Graham, an Alive Hospice home-care nurse, was one of several Alive Hospice staff members who took part in the filming of A Place Called Alive.

Ruth Williams

Last night, Joannie Rochette skated an amazing program in the 2010 Olympic Games in Vancouver. Under ordinary circumstances, no one would be surprised by the talented Canadian’s performance. But this time, it was extraordinary! Not due to her triple-this or triple-that, but due to her ability to offer a lovely program as a gift to her mother, who was so abruptly taken from her by a heart attack on Sunday, just two days earlier.

Could any of us be focused enough to continue as she did? We might quickly respond, “Absolutely not!” However, many individuals who have recently suffered a tragic loss have gone ahead and walked through a graduation ceremony, a wedding, a final exam… We may not be Olympic skaters, but sometimes it’s surprising just what we can pull off in a crisis.

Joannie Rochette was an only child. She and her mother were extremely close. I get that. My daughter (an “only”) and I are very close. Could she go on with a big event in her life – without me? Right now, my own daughter’s “Olympic event” on the horizon is her wedding. Somehow, I believe she could go through with her wedding, even if I were to leave her physically. Why? Because love goes so deep. And love is the sustaining force we can call upon in a crisis.

Her mother, Thérèse, was so proud of her daughter, Joannie. I believe that love and connection stretches beyond the physical. It can and will carry us through … whatever is in front of us.

Grief can seem crushing in moments. But in other moments, love can carry us, elevating us to new heights, allowing us to reach beyond what we could even imagine. Way to go, Joannie! You are being caressed and held up by your mom. We can even feel it.

Ruth Williams is a counselor with Alive Grief Support Services, the bereavement support program of Alive Hospice.

Jan Jones

Next Friday we have the amazing opportunity for our story to be told in a very public way. A Place Called Alive will be aired on Nashville Public Television (NPT channel 8 in Middle Tennessee) at 7 p.m. It is a one-hour documentary of our staff and those whom we are privileged to serve, produced by the Baptist Healing Trust.

It is not often that we have the chance to share so openly the incredible and touching stories we get to live on a daily basis, but that time is almost here! About two years ago, Erie Chapman, a wonderful friend of Alive Hospice and a multi-talented individual, wanted to tell the story of the loving care our staff provides to each person we touch. 

It is a difficult job, to say the least, but people don’t come to us because they want a job. They come because they are called to the mission. In this film we are able to get a glimpse of the reality of their challenges and rewards. We also are able to view the strength of the human spirit in those whose lives touch us. 

Our hope is that by seeing the truth of our joys and sorrows others will be inspired to have important conversations about their own choices at the end of life and an understanding that the journey does not have to be traveled alone. There are loving professionals who are called to walk this journey with you.

Jan Jones is president and CEO of Alive Hospice.

Dr. David Tribble

There has been some excitement about studies regarding patients in Persistent Vegetative State (PVS) that have raised questions as to whether comatose patients are “aware.” One of the studies appeared in the Archives of Neurology in 2007, and another earlier this month.

In the 2007 study, a comatose patient’s functional MRI (fMRI) showed patterns similar to those of a normal volunteer. It is worth putting all this in perspective:

·     This was a single patient (the article then described one other) out of a larger group, the rest of which showed no such response. It is a rare event.

·      So far, we have no evidence that the presence of such a pattern predicts any meaningful degree of recovery. The authors described a subsequent improvement in function, which, though measurable, does not equate to recovery of any ability to interact on a cognitive level.

·      All we know at present is that external stimuli can activate certain areas of the brain in both alert and comatose subjects. We do not know what that activation means.

·      It is interesting that, so far, this pattern has only been seen in brain trauma victims, not in patients with persistent vegetative state from oxygen deprivation injury, catastrophic strokes, or the like.

A larger study appeared in the New England Journal of Medicine earlier this month with results similar to those in the 2007 study.

This all bears a lot more study before we decide it actually means anything. If our rapidly evolving technology has taught us anything, it has taught us that just because we can see something does not mean we actually understand it. When MRI was first developed, we got a clearer picture of the spine, for example, than we had ever had before, and saw all sorts of spurs and disk abnormalities that we assumed to be the source of a patient’s back pain. This led to many surgeries, many of which produced no benefit for the patient, before we realized these same changes could be found in patients who had no back pain at all.

We learned that, just because we could see them did not mean that they had anything to do with the problem at hand.

The key to this issue of activation of the fMRI, then, lies in whether or not it actually predicts anything of value, in terms of recovery for the patient. Another issue is whether or not this phenomenon, if it does predict recovery, is limited to certain types of brain injuries or can be generalized to all patients in persistent vegetative state.

What I would like to see us avoid, however, is the widespread application of yet another expensive technology to a large group of PVS patients in the absence of any evidence that this technology will benefit them in any meaningful way.

Being a hospice and palliative care physician does not make me anti-technology. If there is an opportunity for a patient to recover, and the patient wants that opportunity, hospice care is not the patient’s best alternative, and I would certainly encourage such a patient to pursue that recovery. If this technology actually predicts recovery (and we could probably argue endlessly about what constitutes meaningful recovery; I would argue that it should include the ability to have meaningful relationship with the people around them) and we can identify that group for which it is so effective, I would argue for the use of this technology in that group.

What we have seen, instead, is the lay press making blanket claims about PVS patients based on an article that describes only a very small minority of those studied, raising unfounded hopes for recovery among those who grieve these unfortunate victims. It would be better to announce such a development to the world as a whole after we have some idea what it really means.

Dr. David Tribble is Alive Hospice’s chief medical officer.

Janny Adkins

Every once in a while when I speak with a family about Alive Hospice services, a patient or family member asks, “What can Alive Hospice do for me that home health care cannot do?”

Good question. Both types of health care are excellent and understanding the differing focus of each can help select the best program to fit the patient’s needs.

To answer this question, a clear understanding of the focus of hospice helps. Alive Hospice’s focus is on quality of life and patient comfort, combined with experience and knowledge in pain and symptom management, education, and emotional and spiritual support. Hospice care is for people with a life-threatening illness. Home health agencies often focus on rehabilitation and traditional medical management for homebound patients where the goal is cure and rehabilitation of the physical body.

Hospice covers medications and supplies related to life-threatening illnesses and does not require the patient to be homebound. Alive Hospice’s focus is on the patient and the family together; home health care focuses primarily on the patient.

Finally, hospice acknowledges that, as the patient becomes more ill, his or her needs may also increase. Traditional home health serves patients with a high level of need and attempts to reduce those needs as they move toward recovery.

Alive Hospice also has a team of physicians that are able to visit patients in their homes if needed, and nurses are accessible 24/7 to provide nursing expertise, support, and crisis management.

If you would like to know more about Alive Hospice’s services, please call me at 615-332-4003, or e-mail me.

Janny Adkins is an Alive Hospice account executive who informs health care professionals, patients, and families about hospice care.

Sarah Neeley

Six months ago my darling husband, John, died peacefully at our home in the care of Alive Hospice. I still have heart-warming memories of such a calm death and the friends that circled the wagon immediately afterwards.

The newsflash is that I am still grieving. I still miss my darling husband. I miss him healthy and I miss him sick. Everyone else’s life seems back to normal and I am trying to find out how to interview a new lawn service. That is not my job. I cry when I have to do those new tasks.

But, I do laugh again and I never thought I would do that. I don’t laugh every day but the Universe is so funny to me. We laughed a lot so the same connection I feel when I cry I also feel when I laugh. I never would have thought that about the laughter would connect me to him.

I never knew that one could be alone with such intense feelings and welcome them. I love thinking about his thoughts about what’s going on in the world of sports. He would be furious at Tiger and mad at Favre for not making it to the Super Bowl and mad that Peyton was back at the “Big Dance.” He would good-humouredly rant and rant about these issues and I would laugh and laugh. It tickles me just to think about it.

So, perhaps besides teaching me invaluable life lessons, he also taught me more about laughing. Perhaps grief is as much a learning experience as it is an emotional process. At least, at six months, that’s the way I am experiencing it. I am not just learning about who to call for what but I am learning that all emotions have equal value.

A laugh is as important as a tear.

I am still sad my darling husband died but I am happier that he lived and that he loved and taught me. I am a more real spiritual being because of this detested grief.

Sarah Neeley is Alive Hospice’s clinical nurse educator.

Jared Porter

It’s the first Wednesday of the month, and that means it’s time for the February 2010 edition of Palliative Care Grand Rounds, a rotating compendium of blog entries pertaining to hospice, palliative care, and grief matters. It’s some of the most thought-provoking and helpful information on the Web today.

Alive Hospice is honored to host this month’s edition of PCGR. We’re proud to have celebrated the one-year anniversary of the Alive Hospice Blog in January, and to be part of the ongoing conversation about hospice and palliative care and grief support.

(By the way, have you heard? PCGR now has subscription options. You can follow by e-mail or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.)

Without further ado, this month’s edition of PCGR is broken down into several categories:

1. In memoriam
2. Through the eyes of caregivers
3. Life lessons
4. Grief and living
5. Living the hospice journey
6. Volunteerism
7. Self-care
8. Potpourri
9. Loving care

The family of Life As A Hospice Patient blogger Judi Chamberlin delivered the sad tidings of Judi’s passing in January. Judi began blogging about her experiences in 2008.

From the January 17 entry posted by Judi’s family:

“If you’re reading this you’ve obviously been keeping up with the blog and know the wonderful, sometimes heroic way in which, like much of her life, Judi faced the inevitability of her own death. We know that so many of you loved Judi and will miss her.”

Life as A Hospice Patient will remain accessible for the time being. A memorial Web site has been established, and Judi’s family has invited friends to share their thoughts here. Judi will be deeply missed.

Lora at Less of Me… wrote about recently becoming a hospice volunteer coordinator (welcome to hospice, Lora!), the poignant journey that led her to pursue a career in hospice care, and her impressions so far.

Jay at Two Women Blogging, who also happens to be a hospice and palliative physician, wrote about the resilience of the human spirit at the end of life in this heartwarming entry. The one-word title of this entry says it all: “Gifts.”

Pallimed’s Drew Rosielle commented on a study in the journal Cancer about methadone in outpatient care.

Liz at Eternal Lizdom recounted a conversation she had with her 5-year-old daughter about death and dying. Some questions are just hard to answer – not just for children, but for adults, too.

Rev. Tommy Williams (a Methodist minister who posts thoughts at Letters from the Field) wrote about one of the best Christmas gifts he has ever received – a book on death and dying – and the insights he gained by reading it.

Anglican priest Lesley Fellows, blogging from the UK at Lesley’s Blog, also contemplated death and its implications for how we live our lives, and faith. Lesley’s neighbor to the north in Scotland, Liz – a Presbyterian minister and hospice chaplain – also contemplated how end-of-life conversations have had an unmistakable impact on living her own life.

Robbie Miller Kaplan of Comforting Words – When You Don’t Know What To Say reminds us just how true the words “time heals” are, and what we can do to help that happen when someone close to us loses a loved one.

If you loved Julie and Julia, you’ll love this. (And if you haven’t seen the movie, chances are you’ll like it just the same!) For many of us, there are things that will forever keep us forever linked to loved ones who have gone before us. Life in Chicago’s Claire Bidwell Smith wrote about what makes her feel connected to her mother years after her death. A delicious tribute.

Leigh at Confessions of a Young (Looking) Social Worker offers helpful information about navigating some necessary tasks following the loss of a loved one. A great resource.

Hospice Foundation of America’s Hospice and Caregiving Blog shared about a high school elective course that is doing a great deal to familiarize the next generation with hospice care.

A mother of five wrote about her family’s experience with hospice. This one will put a smile on your face.

Mattie, an adorable Shih Tzu with a heart that can barely be contained in his four-legged body, tells us about how he makes a difference as a pet therapy volunteer at hospices, hospitals, and nursing homes with his human companion. (Equally heartwarming are the comments readers posted in response to this particular blog entry.)

Dr. Judy Littleford, an anesthesiologist-turned-palliative-physician, is taking part in a palliative medicine fellowship and writes about her experiences at Palliative Chronicle. In one recent entry, titled “The Mozart Effect,” she wrote about something that comforts her when the inevitable happens: losing a patient, and in the process, their families.

GeriPal – A Geriatrics and Palliative Care Blog had an entry in January focusing on post-traumatic stress symptoms among WWII veterans.

About.com: Palliative Care’s Angela Morrow, RN called attention to a recent study in the journal Cancer about doctors and delaying discussions about end-of-life care. She offers thoughtful commentary about the study, and she wants to hear what you think. (Leave a comment!)

Pallimed’s Christian Sinclair pondered what the response of the palliative and grief support communities could be when disasters strike, drawing upon the earthquakes in Haiti as a timely example.

Also, Christian Sinclair takes us back in time to January 2006 with a look at what topics were generating conversation during the first year of Pallimed: A Hospice & Palliative Medicine Blog. Christian plans for this to be a regular feature, so watch for it when you visit Pallimed!

To wrap up, here’s one just in time for Valentine’s Day: a Pallimed: Arts & Humanities review of a book that shows love at its very best. The book, written by Judith Fox, is titled I Still Do: Loving and Living with Alzheimer’s Dementia.