Wednesday, September 02, 2009

Palliative Care Grounds 1.8

Welcome to the latest edition of Palliative Care Grand Rounds! I'm honored to be your hostess this month and excited to share some of my favorite death and loss blogs. I've taken some liberty in sharing blogs that aren't specifically palliative or hospice-related but still applicable to the field. Remember to follow the blogs you like and comment often- I promise it never gets old. While I was gathering my thoughts for this, I realized almost everything could be compiled as if I were doing a psychosocial assessment, incomplete though it may be. This means I am either clever or need a vacation, most likely a combination of both. In any case, enjoy!

PCGR now has subscription options; you can follow by
email or RSS feed. An aggregated feed of credible, rotating health and medicine blog carnivals is also available.


Medical History
The latest article in the New York Times series "Months to Live" has generated some interesting feedback in the blogging arena. Check out Christian Sinclair's insightful response to "Breaking the Bad News" over at Pallimed. Gail Austen, president of the American Academy of Hospice and Palliative Medicine, sent this letter to the editor noting an important distinction about palliative care.

Kristy Richardson has kidney cancer. What makes her unusual is that she apparently never had surgery or treatment. Here she is, 22 months after her diagnosis. She's not had an easy go of things, what with being denied Medicaid and Disability- from what I can tell, this is why she hasn't had surgery,etc. Cancer rant is also worth looking at.

Hospice Physician is a wonderful addition to the blogging world. It was tough deciding which posts to feature. Read "Are They Really Dying?" and "Congratulations You've Graduated Hospice."

Are you tired of asking patients to rate pain on a 0 to 10 scale? How to Cope with Pain has some thoughts on that issue.

Dr. Muriel Gillick shares her thoughts after reading a New York Times Magazine article from 1950, "Recharting Life for an Aging America." She notes that there's been a change in perspective but questions: "Is the result really that Americans today fail to accept that death is inevitable? Or do patients appear to believe that death is optional because physicians seldom discuss life’s final stage and continue to offer treatments, even if they are of little or no benefit? For all the lip service paid to informed consent and joint physician-patient decision making, older patients seldom understand their likely trajectory with and without a particular treatment."

Advance Directives
The Eldercare ABC Blog has a wealth of information regarding, you guessed it, elder care. Of note is the article on what will happen if one does not have a DNR. The author offers practical suggestions on how to let people know what your wishes are, especially once you are unable to express them yourself.

SocialWorkEmergency shares this story about a woman whose father had a poor prognosis. She was not ready to withdraw care and it seemed her father had not left Advance Directives or discussed his final wishes so the hospital had to respect her decision in the end- although some of the staff took the badgering approach.

And if you weren't already convinced that Advanced Directives are important, David Fisher, MD, MPH lays it out on the line with "The document that is more important than a living will." He writes: "
If you were to become very ill, unless someone has a copy of your living will, it may never be followed. It is much more powerful to have a living, breathing advocate (your Power of Attorney for Health Care) who understands your wishes and can help guide your doctor through the myriad of possible scenarios that can occur if and when you become ill." It's important to note that you do not need a lawyer or notary public for the form to be legal and Dr. Fisher kindly includes links so you can print off your own copies.

What if you don't think your loved one will follow your wishes? Cooking with Dee suggests that you take care of the paperwork well in advance. She shares how her sisters overrode her mother's wishes until her mom could finally and firmly tell everyone she did not want any more treatment. This has impacted how she and her husband view the eventual ends of their own lives. "
We will both do our own papers and sign DNR’s because we don’t trust each other to let the other go. I know that in my heart." The presumption is that with the paperwork in place, the spouse will indeed follow what it says- it takes the guesswork out of the process. I hope that will be true if and when they are in that position.

Wings of Madness focuses on the ins and outs of depression, offering information, news, and support. There's also a support forum for those struggling with depression. Of particular use is the article "What to Do (On and Off the Web) While You're Waiting for Your Antidepressant to Kick In." A fair amount of palliative care and hospice patients are put on antidepressants but there is sometimes a concern that there's not enough time for the medication to be effective or that it will take too long to work. This article addresses hands-on ways people can deal with depression before the medication kicks in, from music and book suggestions to ideas on self-care.

Kieran is a writer with terminal lung cancer. He opens up about his experience with therapy. I love that he says he doesn't really need to see a shrink but that he does need help in dealing with the things happening in his life. I'm of the belief that everyone could benefit from having a nonbiased listener in their life and I'm glad Kieran has found his. His mom recently died amidst some changes in his own health. He writes poignantly of his grief while laying in his hospital room.

The Naked Soul invites us to accompany him on his spiritual journey. Hardships Along Our Journey is relevant for ourselves and for the people we serve.

Family History and Dynamics
Daughter of Cancer, whose mom had glioblastoma, shared what to say and what not to say before her mom died. This particular blogger notes she is a private person and will not often share her feelings with family and friends- hence, her blog. This is what makes her openness regarding her grief so compelling. Here she talks about how she tried to disengage before her mom died and wondering what the rest of her family is feeling.

Hospice Doctor shares the story of a 20 year old patient with a rather dysfunctional family. "A couple of weeks ago, another relative who helped care for Helen told me that Helen was an angel who'd been sent to earth to fix her mom. Unable to do that, Helen had to leave...We all search for meaning as we confront the unspeakable. It occurred to me that I had no better explanation for this tragedy."

Should a well partner separate from the sick partner? An advice columnist recently gave the OK, in a post featured on In Sickness and In Health. That kind of advice gives me the willies!

The New Old Age Blog looks at the way divorce can complicate caregiving situations. Blended families can mean more elderly parents to care for but also more complicated family dynamics.

Culture and Ethnicity
The Masked AMHP works in a Community Mental Health Team in England. "Lost in Translation" discusses the need for an interpreter for a Portuguese girl who could not hear. I've heard of sticky interpretation situations but this one might take the cake!

Caregiving Needs
Nursing homes get a bad rap, which is not always justified. Unfortunately, if you've worked in the healthcare industry, you've likely experienced a bad nursing home at some point. Jonathan Rosenfeld's Nursing Home Abuse Blog holds nursing homes accountable for their care, with the goal of improving quality of care for their residents. He recommends America's Best Nursing Homes if you're trying to find a long-term care facility for your loved one.

I'm grateful that discharge planning is a very limited part of my job. Setting up caregiving or finding a bed at a nursing home that meets someone's specifications is never easy in my experience. My hat is off to the medical social worker at The Unburdening who deals with demanding families and does her best to meet their "needs" every time.

I would be remiss if I didn't take a moment to focus on family caregivers. They are the unsung heroes of end of life care. I appreciate the honesty and vulnerability found on Dying to Help. "My Mother Told Us There'd Be Days Like This" and "Hurry Up and Die" highlight the difficulty in caring for a loved one. We are ready for the burden of caregiving to end but we are never fully ready to let go.

GeriPal has a great take on family caregivers, referring to them as the Silent Long Term Care System. I should note that GeriPal is another site that has so many relevant posts, it was hard to know how to categorize them!

Resources In Use or Needed
Often patients needing palliative or hospice care are no longer able to work. They may be eligible for Social Security Disability but it's not always an easy process to apply. The Social Security Disability Blog answers just about every question one could ever have about the system.

Stop by Dream Advocate, a social work grad student who is starting her second year fieldwork placement at the Health Care for Homeless Veterans program. This might not seem like it would have obvious ties but over the years I have worked with veterans who were either homeless at some point or recently placed at a facility before coming on board with hospice. The VA does offer good assistance if one has time to navigate the paperwork and the system. I'll be interested to hear what situations Dream Advocate finds herself in and any legislation created to help our veterans. Maybe she'll give us tips on dealing with the VA! Also check out her thoughts on the book Anti-Cancer: A New Way of Life- she never posted a full review but she does share some interesting thoughts.

Coping Skills & Self-Care
I adore Carl Witten's blog "A Pastor's Cancer Diary." It was seriously difficult to figure out which posts to share and how to categorize him. "Laughter Yoga" is certainly an interesting concept. In "Resilience" he compares the effects of cancer treatment with the PTSD experienced by soldiers in combat, noting that "Cancer need not be a life-shattering experience, no more than a tour of duty in a war zone needs to be. Both experiences are difficult, even life-changing. Yet, both are survivable, psychologically speaking." "The Breadth of God" examines how a serious illness can deepen faith with a wonderful passage from Rabbi David Wolpe.

Celebrate Simple Pleasures at Being Chronically Ill is a Pill. She shares a good reminder: "When I am feeling particularly frustrated by my illnesses and like nothing works right in my entire body (pity-party anyone?) I sit myself down and focus on all the things about me that DO work."

Funeral Arrangements
Everyone Needs Therapy shares a friend's experience at his mother's funeral and offers insights on the expression of emotions at funerals. There is a difference between public and private grief/mourning; there is not one "right" way to do it. We often want to present a brave face during times of sorrow but we should also allow our friends and family to share those emotions with us. ENT is a great mental health resource and covers a variety of topics.

LCSW Mom works in hospice and as a crisis clinician in a trauma center. She shares a reflection read at her grandmother's funeral.

Ever consider holding your funeral before you died? That's just what Judi (Life as a Hospice Patient) did recently. She has a full recap here on the events. It sounds like it was a lovely celebration that captured Judi's spirit and advocated her cause.

Bereavement history
Quilting is an interesting form of memory making. It can be hard to let go of a loved one's favorite t-shirts, ties, or quirky dress. We want to hold on to the memories but we don't always have the space. Converting the clothes into a quilt of blanket can be a therapeutic exercise, creating a lovely keepsake along the way. This blogger created a quilt using her stepfather's favorite t-shirts and sweatshirts; it's touching to read about the associations with each item and the author's description of her and her mom's grief. This woman writes about wanting to make a quilt using her baby daughter's clothes and then realizing she's not ready yet.

Sarah talks about the pain of going through her mother's clothes and finding the nightgown her mom wore when she died. She plans on making a quilt for herself and her two sisters, thanks to the kindness of a woman named Sue. Read here and here to see Sarah's mental preparation/state for going through the clothes. Sarah faces infertility along with mourning her mother's death; she is very honest and candid about all that she faces, making her blog a must-read for me.

Malcolm Payne of St. Christopher's Hospice in London writes Social Care/Palliative Care, a social work at the end of life blog. I would be interested to hear what people think of Payne's thoughts on the need, or possible lack thereof, for bereavement assessments. He writes: "We in the people-working professions have defined something perfectly natural as a problem because we have sometimes come across people who have problems with it. There’s a bigger risk that we’re propagating unnecessary involvement in services than the risk people run by feeling sad when someone important dies."

Other odds and ends:
Linda Mock, a hospice RN, has set up a R.E.S.T. (Receive Enough Support Today) to acknowledge the professional stress of working in hospice. Symbolic Loss resonated particularly with me. It often seems I do not have a chance to process the loss of one patient before being presented with 3 new admits.

Social Work Blogs has links to social work blogs of all kinds- a very handy directory.

BlogCatalog has a Death and Dying category. Not all the links belong there (I saw one blog on weddings!?!?) but I found a bunch of great new resources, too.

Next month's Rounds will be hosted by GeriPal on Wednesday October 7. Be sure to check it out!


Christian Sinclair, MD said...

First! (to comment)

Great job on PC Grand Rounds. Thanks for featuring Pallimed. I like that you have highlighted a few patient or family oriented blogs; a good perspective from the other side of the clinical relationship is important to remember.

Thanks again!

Brice Mosby said...

For a bit provocative and in your face blog for elder care that has just been running for 4 months now (I think) is

This blog has not taken off yet, and I found it randomly on Twitter. Give it a try, it's not your typical Elder Care Blog. There is also an Elder Life Series online television show, it's interesting and has some funny and some seriousness. It's a good mix.


Eric Widera said...

Wow! I’m not sure how GeriPal is going to top this for next months PC Grand Rounds. This must be the way the contestant who followed Susan Boyle felt after Susan sang on Britain’s Got Talent (or how Carrot Top feels when he takes the stage after Jerry Seinfeld). Tough act to follow – we’ll try our best.

Patrice Villars said...

Thank you for the comprehensive and valuable grand rounds. I look forward to delving into the many articles and references you site. Beautifully organized, beautifully stated, beautifully interdisciplinary.

Mark said...

This looks like a great gathering of resources! Thank-you for including the Naked Soul under spirituality, I am honored to be included with so many great resources.

Anonymous said...

Great job! I think you should change the title of your blog to "Confessions of a Good (Looking) Social Worker"! ;)

LeighSW said...

Thanks everyone for the encouraging words and shameless flattery! I'm glad you enjoyed reading through this. Eric, I know you and the GeriPal crew are going to do an awesome job next month. Can't wait!

Anonymous said...

Thank you for mentioning The Accidental Tourist Blog. I feel honored and it was great finding your blog and reading it as well. Kudos and Great Work! Perhaps you have some infinite wisdom to help me through today. Check out the Houston, We Have A Problem entry...

Cynthia said...

Interesting blog. I've been looking at elder and senior care and keep coming across issues involving denture creams and neurological problems. It seems that some popular creams are involved and lawsuits are beginning to be filed. I found a site that is sponsored, I believe, by an attorney group, but that has some good health and legal information: I hope this is of help to your readership.

Tim Cousounis said...

Leigh, outstanding - this Grand Rounds covered lots of ground with plenty of opportunties to explore further.