Placing the Pall

I've been reading "Death & Dying, Life & Living" as I study for my upcoming Thanatology certification test. The book is a great overview and I would recommend it to anyone interested in end of life issues. I wanted to share a section that struck me in an unexpected way. The authors were defining the word palliative.

"Originally, "to palliate" meant "to cover with...a cloak" (Oxford English Dictionary, 1989, vol. 11, p.101). This meaning can be seen in the practice of covering the casket at a funeral with a cloth called a "pall.""

This is nothing new in itself but reading anew where the term "pall" comes from took me back two years. A few days after my great-aunt Teresa died, my grandparents were busy finalizing the funeral arrangements. I was at a track event from one of my youth group girls and I remember it being an unusually chilly Saturday for April. Somehow I had the foresight to turn the volume on my cell phone, as I typically keep it on meeting mode. I was sitting in the bleachers with my co-leader while we waited for the meet to begin. And then my grandma called me and asked if I would like to place the pall at Aunt Teresa's funeral. I was very honored to be asked. We chatted a little longer and then said we'd see each other the next day at the visitation. Until reading the above passage, I hadn't thought about that phone call since it happened. I realized it was the last time my grandma called me. She was diagnosed with stage III multiple myeloma a week after Teresa's funeral and died a month after that. I spent countless hours with her between that phone call and her final moments. But there's something about that phone call that is so precious to me, even though I couldn't tell you what else we talked about or how long the conversation was. She called with a special purpose. She called to thank me for the ways I helped throughout Teresa's time on hospice and the day she died. And she probably ensured that I wasn't driving while I talked on my cell phone- one of her biggest concerns, second only to whether or not I had a sweater or coat to keep me warm in cold temperatures. Ironically I remember little about placing the pall at Teresa's funeral. I might have handed it to the priest and then a few of us placed it on the casket. I do remember feeling odd about playing a part in a Catholic funeral since I and my immediate family are not Catholic. (Imagine how I felt when I and my cousins Clara and Emily carried the elements to the priest at Grandma's funeral! I can assure you we did not partake.) I haven't allowed myself to write much about my Grandma's death but lately I've been flooded with different memories. Maybe that means it's time to write now what I couldn't write then. My grandmother radiated love and I miss her. I am thankful to remember this forgotten moment.

Pastor practices what he preaches

This video gives the background on Rev. Forrest Church. Church and Carl Lehmann-Haupt developed the idea for Church to examine what it is to live and minister in the face of cancer. Church decided to find out if the advice he had given all those years to others really worked and applied to his own life. He said: "Many people who are dying have an opportunity—but sometimes don't have the imagination to seize. And that is to turn my life…into a prayer, to embrace life, to accept my past and just say 'yes' to it. Not to let the future haunt me, but to be in the moment, aware of the miracle, which is life itself, which would not exist if death was not one of its hinges." Each week a new segment will be featured on AARP. The Prologue is below. Click here for Acceptance and here for Appreciation.

Doctors and Psychotropics for the Nursing Home Population

As promised, here's Part Two to the Tribune investigation regarding the use of psychotropic medications with the nursing home population. This section examines the lack of sanctions or discipline for doctors who wrongly prescribe psychotropics. It appears the nursing home gets the blame each and every time. And we know that the nursing home isn't taking matters into their own hands for all those instances. I have to say this investigation makes me more impressed with some of the LTCFs I visit on a regular basis. I always look at my patient's psych history and, from my recollection, the records have always been complete. The facility medical directors and doctors visit regularly and generally seem to provide quality care to the residents for the majority of LTCFs I go to. Yes, there are exceptions but the beauty of my expertise is that when a family decides to place their loved one at a LTCF, I can advise them on the MDs that visit the facility and help them make that decision.

Psychotropic Drugs and Indigent Funerals

If you haven't figured out by now, the Chicago Tribune is a fantastic newspaper and an integral part of my de-stressing routine. Their investigations and news stories never cease to impress me. Today was no exception. The latest Tribune Watchdog investigation regarding compromised care focused on Illinois nursing home residents who receive psychotropics they don't want or need. Part One: Drugged Without Cause ran today and tomorrow I'll post Part Two: Doctors' role in misuse of psychotropics. The article is heavy with incidences of nursing home residents who were given psychotropics without a doctor order, without giving consent, or without a medical or mental health need. I cringed a little bit when I read the headline, fearing that people will read the article and have a knee-jerk reaction. The truth is some people need psychotropics and should stay on them. Not every nursing home or nursing home employee makes such poor decisions, nor do all doctors needlessly order psychotropics. However, it is good for us to be aware that these situations happen and to work to ensure that they do not happen anymore. Medication should not be the first measure, as the article notes. Patients with certain behaviors, anxieties, fears, should be redirected, offered a snack (I get cranky when I'm hungry too!), or involved in an activity (boredom could make even a saint act out.) What bothers me is how employees and nursing homes rationalized such poor practice. Just read this particular example:

At VIP Manor near St. Louis in 2006, a woman with Alzheimer's cried and became extremely anxious when she had to urinate. She also repeatedly asked to go to the bathroom. Nurses responded by giving her injections of two antipsychotics, inspection reports state. When that didn't work, the woman was sent to a hospital for a psychiatric evaluation. The psychiatrist reported back that the woman had a urinary tract infection. VIP Manor's nursing director, whom the report did not identify, told state inspectors that her staff was still learning to look for medical issues before administering psychotropics.
"We aren't there yet, but close," she said.

As my blog's title states, I'm a social worker, not a nurse. But even I know from reading that if the patient cried and became extremely anxious when needing to urinate and requested to go to the bathroom repeatedly, it just might indicate a UTI. How on earth could they have missed that? Why would a psychotropic be the first response and why would it come before a psych eval? And why would medical health professionals need to be trained to look for medical issues before resorting to psychotropics? It just doesn't make sense. I look forward to reading Part Two tomorrow and hope that this investigation will lead to change.

Another interesting article concerned the rise in indigent burials, by 30%, in Chicago this past year. Indigents are buried in Homewood Memorial Gardens, if they have not been identified or if family cannot be found or do not have funds (or are unwilling) to pay for burial. Some financial assistance is available. For people who were on or were eligible for public aid, Illinois Department of Human Services reimburses funeral homes or the family after the funeral, allowing $500 for burials and $1,100 for funerals. The Cook County Veterans Assistance Commission buries any honorably discharged indigent veteran, up to $600. Homewood buries indigents at a cost of $235 per body. What is impressive is that they do not just bury these people, they also memorialize them and allow mortuary school students to participate in the process. Consider these words: "We do not know the circumstances in their lives that brought them to this grave," said Kowalski, also an instructor at Worsham College of Mortuary Science. "Many may have died in poverty, others may have simply outlived their families. Our beginnings do not know our ends."

Cancer Tests for the Elderly

The Chicago Tribune had an interesting article on the conflicting advice seniors receive regarding testing for cancer. I hadn't thought much about the need or effectiveness for these tests in the elderly. In our society, it seems like we are still bent on preventing and treating illness at any cost. If that is still true, then age shouldn't matter. However, when we factor in Advance Directives, costs, and end of life issues, we may come to a different conclusion. Detecting cancer early results in more effective treatments and increased odds of remission. This is true of breast, colon, and cervical cancer when it comes to those under age 65.

On the other side are the potential costs, which can include unnecessary treatments for cancers that never would have become life-threatening, the anxiety and distress associated with cancer diagnosis, the complications associated with screening procedures or therapies, and medical expenses. Take colon cancer. Although detecting a polyp is advantageous at age 50, the benefits are less clear at 80. Typically, polyps take 10 to 15 years to become cancerous and potentially life-threatening, and often seniors will die of other ailments before it happens, said Dr. Neal Persky, a geriatrics specialist at the University of Michigan.

The argument then becomes whether one can assign an age cut off, as seniors are not "one size fits all." Some medical experts believe that if a senior is healthy and would be a good candidate for treatment, then they should take the test.

The influential U.S. Preventive Services Task Force, an independent group that rigorously evaluates preventive services, has suggested stricter standards. It favors ending screenings when evidence indicates most people of a certain age are more likely to die of another condition -- say, stroke or heart failure -- than of cancer. For colon cancer, it sets the bar at 86; for prostate cancer, 75. Older people are more likely to experience complications from the tests and less likely to reap benefits, said Dr. Ned Calonge, task force chairman.

An important question for seniors to consider is what they would do if cancer is found. If they would not pursue treatment, then there is no need for screening. If however they would want chemo, radiation, or surgery, then they should ask to be tested. Above all, a senior must advocate for their wishes either way.

Waiting Room

"Robby" came on to hospice Thursday after deciding to stop dialysis; he had started hospice in March but after a couple of days, decided he still wanted dialysis. Fast forward to August where we cared for his wife of 60 plus years for 6 days on hospice. When I saw Robby after that (while visiting another patient where he lives), his heartbreak was beyond visible. His spirit seemed broken. I was not surprised to hear that he had decided to stop dialysis once and for all. I was, however, surprised when he died this morning. The hospice RN went out to pronounce and then asked me to come and sit with the family while we waited for the funeral home to arrive. I have no problem sitting with families in the midst of their grief. The harder issue is assessing which families want to talk, either about their loved one or any other conversation topic, and which families prefer silence. It turned out this family was a combination of both. We sat in the residence living room; Robby's room was down the hall and family would go in occasionally to say their goodbyes. They shared stories about Robby, from his time in the war to his love of food- Robby was always anxious for the next mealtime. They talked about his decision to stop dialysis, one that not everyone agreed with even though he was well in to his 90s. Sometimes they would get lost in their thoughts. And I tried to be sensitive in the midst of it all. They were able to laugh and find some comfort and meaning in Robby's decision. His son, for instance, was sure that Robby held on for him and his children to arrive before he died. I have no doubt that this is true. There is such a somber note in the air after death; it tinges everyone and everything. Although I was not personally affected by this loss, I tend to take in others' grief like a sponge and eventually need to be wrung out. I ended up staying with them for about an hour and a half. When they left, they thanked me for my time with them and made plans for lunch. I think Robby would have appreciated that. I was glad to be there for them but left drained, as it always happens after such a vigil.

On a lighter note, I went to visit a patient in a group home this afternoon. The other residents are quite demented. As I visited my patient, one woman looked directly at me and distinctly said: "I don't love you...but I don't hate you." Later she was railing on about how "I am not a vegetarian!"

Meetings

Wednesday afternoons are filled with meetings, generally something to endure. Today however I had a few bright moments. First, during the social service team meeting, the hospice director announced that we will no longer have weeknight on-call for social workers or chaplains! Apparently they finally clued in to what we had been telling them. Rarely was anyone called out on a weeknight (I was just once) and it didn't seem like the best use of our resources. We still have to cover weekends and holidays but this is such a load off of everyone. Thank you, God! Second, IDG was filled with laughter and silliness for no apparent reason. I'm sure anyone looking in would have thought we'd lost our minds but it seemed like the release we all needed to have. Third, during an ELNEC class discussion on communication skills, a point was made regarding talking to children on their level. As soon as this was brought up, the on-call RN simply pointed at me. Then she said, "Leigh, this is your area of expertise." And a palliative care RN chimed in with a similar statement; I've worked with her on a number of palliative patients who are parents, as well as our pediatric hospice patient case. It's nice to be recognized for one of my strengths. I am usually the go-to person for any patient with children or teenagers, whether as the family's social worker or as a resource for my coworkers. Working with children brings me such energy. The new bereavement coordinator wants to empower my role with an upcoming children's grief support group. It probably won't start until spring but she wants me to play a big role. Hopefully the administration will agree!

Joining the Army for insurance

A 39 year old man signs up for the Army after being laid off in March so the family could maintain their health insurance. His wife is fighting ovarian cancer. The article notes that the family has not gone to any town meetings or paid attention to the health care coverage debates. Yet their story perfectly illustrates the need for change.

Cindy Bullens

I was introduced to Cindy Bullen's music at the conference. She wrote the CD "Somewhere Between Heaven and Earth" a few years after the death of her 11 year old daughter. The music is beautifully moving and such an apt expression of grief. She also leads workshops, Somewhere Between Heaven and Earth: Grieving Out Loud. "A bereaved mother's story through word and song, told with heart and soul, and tears and laughter." Listen to music clips on CDBaby. Dr. Jordan played a few of the tracks off the CD to illustrate different points in her grief. The title track affected me the most, lyrics are below.

SOMEWHERE BETWEEN HEAVEN & EARTH
by Cindy Bullens

I curse the night
I watched you slip away
Wouldn't have done no good
To beg you to stay

You were here beside me
But now you're gone
I'm just trying hard
To carry on

But there's no rhythm in the rain
There's no magic in the moon
There's no power in this pain
Til somewhere between Heaven and Earth
I can find you again

Hearts are broken
And dreams are lost
But I made a promise to love
At any cost

Little did I know
The price was so high
Losing forever
In the blink of an eye

There's no rhythm in the rain
There's no wishes in the stars
there's no power in this pain
Til somewhere between Heaven and Earth
I can hold you again

If I could one more time
Feel your hand in mine
Hear your voice call my name
And whisper sweet good night

Then there'd be rhythm in the rain
There'd be magic in the moon
No such thing as love in vain
And somewhere between Heaven and Earth
You'd be with me again

And I could see you again
And I could hold you again, my baby
Somewhere between Heaven and Earth....
I will see you again

Conference

I got back yesterday afternoon from a two and a half day conference: Foundations of Bereavement Counseling, presented through CMI and The American Academy of Bereavement. The conference was taught by Robert Zucker and Jack Jordan, both excellent speakers. I had seen Zucker before, and even though I'd heard a lot of the material at a seminar I attended about a year ago, it served as a great review and still gave me new ideas on working with grieving children and teens. I wish I could head to Phoenix next for Advanced Bereavement Counseling but alas, I had to pay for this one myself. The conference was great overall but emotionally exhausting, as it appears most mental health related conferences also serve as therapy sessions. Of course, talking about grief just ups the ante if you have personally experienced loss. Yes, there were things that I applied to my own loss experiences but I also realized anew how empathetic I am. Tears easily welled up when other people would share their losses, whether a miscarriage, loss of a child, violent death, or losing a parent as an adult. I'll probably share some insights over time. For now I thought I'd just share a few take away phrases and let you mull them over.

In terms of society's view of death: "It's not that I object to my death; I just don't want to be there when it happens." -Woody Allen

We're on the same path as our clients when we're in this line of work. We must face our own losses and face our mortality.

Grief is like phantom limb pain.

The best gift we can give the grieving person is to recognize that we do not know what this experience means to them and to communicate that we are willing to find out and understand.

Your task when you are grieving is not to let go but to find a different way to hold on. Death ends a life but it does not end the relationship.

Hospice Documentation

The clinical director sends us copies of Home Healthcare Nurse: The Journal for the Home Care and Hospice Professional each month. The October issue had an interesting article regarding hospice documentation, specifically related to performance improvement and CoPs (Conditions of Participation.) If you or your organization subscribe to the journal, it's well worth reading. Assuming you don't have access to the article, I'll leave you with some of the highlights.

CMS started collecting data in 2007 and will launch phase 3 on January 1, 2010. Hospice providers will then be required to list visit lengths and number of visits by physicians/nurse practitioners, nurses, social workers, and aides, as well as PT, OT, and ST, and the length of phone calls made by social workers that are related to the terminal illness. It is well worth noting that complete comprehensive documentation by the interdisciplinary group (IDG) members is even more critical now that so many governmental systems are watching hospice providers. Documentation provides evidence of the care provided, verifies the quality and coordination of care, ensures continuity of care, shows compliance with various regulations and organizations, provides substantiation of the sequence of care in the court of law, and provides the basis for service reimbursement. (Ah, yes, it always comes back to money.)

Documentation should tell the patient's story in a legible, complete, and consistent way. The story begins with the initial assessment of the patient's needs, as well as the needs of the family or caregiver. IDG members should consistently and objectively document the patient's and family's/caregiver's status and the state of their environment each contact. There should be 1) a complete description of interventions provided to the patient and family or caregiver, 2) the patient's pain and symptom presentation and interventions and evaluations, 3) communication with the MD, other IDG members, and any nonhospice professionals, and 4) the observed or verbal responses to interventions and care.

Stay away from vague, inconsistent, and contradictory statements about the patient's status or clinical interventions. Avoid using these: "continues slow decline," "remains hospice appropriate," and "needs more care." Make sure the hospice team is seeing the same thing, i.e. the RN documents that the patient is ambulatory while the aide lists the patient as bedbound.

Comparative charting is a best practice method. Comparative charting contrasts the patient's present condition to their prior condition. This also individualizes the patient by looking at their specific trajectory of decline and presenting specific information instead of generalizations. Assessment of the terminal condition should be emphasized and also include any comorbidities that impact the prognosis. There should also be an individualized description of the patient's status as it relates to the terminal diagnosis. Examples can include documenting any limits to daily activities for a patient with CHF or describing the use of oxygen for a patient with COPD.

My organization is currently examining how we document and trying to streamline the process. Social workers and chaplains started using Assessment-Intervention-Plan as a guideline for our clinical notes. It was an adjustment at first to figure out how to structure the clinical note, since I was used to a free form narrative. However, now that I've been doing it for about 2 months, I love it! Each visit, I copy the old note in to the new one and tailor it to the visit I just made. It serves as a refresher for what I've been working on with that patient and helps me keep my plan of care more current. I don't know what Medicare will throw at us next but I think my organization is ready to meet the challenge.

Palliative Care Grounds 1.9

The latest edition of Palliative Care Grounds is up at GeriPal. There's some great new bloggers to check out!

Bruce

I was pleasantly surprised to open my newspaper this morning and see Bruce Conley's name on the front page. Bruce has been a long-time friend of my grandparents. We used his funeral home for my great-aunt and grandmother 2 years ago and I was blown away by his compassion and the many personal touches Conley Funeral Home added to the visitation and funeral services. I have heartily recommended Conley's to my patients ever since. No one could have ever guessed that his work would come closer to home. Bruce was diagnosed with cancer in January. The community has rallied around him. His son Ben is now primarily running the funeral home while his dad goes for chemo. The Tribune article touches on how many lives Bruce has touched as a funeral director and grief counselor. Bruce has taken the funeral industry to a new level by recognizing the role it can also play in terms of grief support. "Conley's relationship with survivors often lasted years beyond burial, continuing with birthday cards, counseling, support groups and grief programs at the Conley Farm -- pioneering one of the state's most comprehensive after-care bereavement programs." Bruce is in my thoughts and prayers. I hope that remission will be in his near future.

A 2 minute video in which Bruce shares thoughts from his journal in regards to having cancer:

Pediatric Hospice

I have much to write about but little time to do it. The short story is that I'm pondering a job change in the next year. Originally I thought I'd pursue a bereavement position but lately I've been thinking about pediatric hospice again. This means it's time to research. Would I be a good candidate even though I have little experience specific to pediatrics? When I look at my history as a whole (child and teen bereavement counseling for 3 years, field work placement working with pregnant and parenting teens through county health department, residential counselor for teenage delinquents, youth group leader, mentor to child with autism, etc.), I think I could be a great candidate but I've only had 2 pediatric patients while working in hospice. Any suggestions on what I could do to improve my chances or on good information regarding this field? I'd appreciate it!

Liquid Bowel Medications

GeriPal has created a wonderful, moving video taste test of liquid bowel medications. I especially appreciate their insights as a non-medical professional working in health care. I've amassed a knowledge of commonly used medications over the years, as it is a frequent topic when I visit patients whether discussing effectiveness or cursed side effects. Oh, so many bowel-related puns to choose from, so little time. You'll laugh, you'll cry, you'll run to the bathroom.

Confidentiality

Amongst some of the social work blogs I follow, there's been an interesting discussion regarding confidentiality and blogging. Eyes Opened Wider lays out how seriously she strives to protect identities and maintain confidentiality. I added my two cents in the comments section but thought it might be worthwhile to raise this issue here. When I first started my blog, it was meant to be a place for friends and family to read about both my personal and professional experiences. At times I wrote more about my travels and the White Sox than I wrote about work. However, in the past year this blog has developed into a professional resource-only, in response to increased traffic. It's exciting to have a bigger readership but it also means I need to double my efforts to protect my patients' identities. I've started reviewing old posts and revising here and there just to be sure. I've also taken out some personal musings that might reveal clues to where I work. I've toyed with the idea of publishing my name and workplace but I'm not ready for that yet- or maybe I just don't want to involve HR!

In any case, here are some of the ways I try to maintain confidentiality:
1. Under my blog title, it states that patient names and identifying information has been changed. This is in accordance with the great and mighty HIPAA.
2. Patient names on this blog are never close to their actual names, which is sometimes a shame because I could never make them up. Sometimes I use TV or Movie characters, random initials, or a random name.
3. I vary ages, sometimes accurate or sometimes a general "in their 70s." It depends on why I'm sharing the story.
4. I usually give an accurate diagnosis unless the diagnosis has no bearing on the story.
5. I struggle with how much to share when it comes to a patient's background or family dynamics. I find those aspects to be so compelling that I want to tell it all but I have become better over the years at picking and choosing what to share. If a patient's story is one of a kind, then I tend to change all the other information.
6. When pictures are included (i.e. Bucket List patient), permission is always requested first.

Like the other social work bloggers, I never share a story that I did not experience myself. I originally thought this blog would be a good outlet for me to process the hospice and bereavement worlds but it has grown in to something more. I am honored that someone would want to read this blog and that my clumsy words might be of use to them. I appreciate all your feedback and insights. If you ever think I am not safeguarding my patients and their families, please let me know! We could all use a good reminder once in awhile.

Any suggestions or pointers for how you protect patient identities while blogging?