Monday, August 31, 2009

Health Care Around the World

Thank you to "Tales from the Serenity Now Hospital" for sharing this Washington Post article. 5 Myths About Health Care Around the World presents its case well and should be mandatory reading for all who are involved with the upcoming health care legislation. Consider this example regarding the myth that foreign health care systems are inefficient bureaucracies:

"The world champion at controlling medical costs is Japan, even though its aging population is a profligate consumer of medical care. On average, the Japanese go to the doctor 15 times a year, three times the U.S. rate. They have twice as many MRI scans and X-rays. Quality is high; life expectancy and recovery rates for major diseases are better than in the United States. And yet Japan spends about $3,400 per person annually on health care; the United States spends more than $7,000."

At the very least, this should make us think.

Saturday, August 29, 2009

Cancer Mama


Sarah Joanis is a young woman who was diagnosed with ovarian cancer 3 months after learning she was pregnant. Her story was recently featured in the Chicago Tribune. Her daughter Natalie was delivered safely and Sarah is doing well. Check out her post on wig shopping and the transition after Natalie was born while Sarah was undergoing chemo.

Friday, August 28, 2009

Insights from a family caregiver

Elisabeth Graham's piece on caring for her father-in-law is well worth the read. Her mother-in-law has a toxic personality, the family has decided to care for him at home themselves, and her father-in-law's disease doesn't follow the normal trajectory leading to a longer caregiving stint than they imagined.

"Each time I canceled another month's engagements, a sense of hopelessness knocked me down. I pled daily for mercy, intervention—anything to bring this season of life to an end. "God, is this how my life will be forever? What's your purpose in keeping John alive?" Immediately guilt swamped me. How could I be so self-centered?

As an only child, Mike had no siblings to share the burden of John's care. Friends asked why we didn't put John in a home or insist that Agnes hire nursing care. But as much as I hated what my life had become, I knew John must hate his life even more. Mine would eventually get better; his was ending. The least I could do was make the end as pleasant and easy as possible. Keeping him home was one way. Buffering Agnes was another."

Money Matters

Financial Management During a Medical Crisis.

Good info for families, especially if their loved one is incapacitated. Best to take care of these details upfront- it'll save you a lot of hassle in the long run.

Thursday, August 27, 2009

Circle of Friends

I'm so remiss in posting on this resource for those living in the West Lafayette, IN area. Suzan Windnagel attended the Comprehensive Bereavement Skills Training I went to in May. Her husband had early-onset Alzheimers. As his disease progressed, she searched for ways to keep him active and engaged. Circle of Friends evolved out of that journey, developing creative programs for people with memory loss. Suzan and Joanne Gutek (a speech-language pathologist) began the Brainbuilders Men's Group to maximize thinking, memory, and communication through the creation of a photo lifestory book, cognitive exercises, and art. Some great art has emerged from this group leading to selling greeting cards at a few fine arts fairs. The cards sold out! While the Men's Group meets, the Circle of Support Group meets for the caregivers. This is a valued opportunity for caregivers to care for themselves by sharing ideas, resources, solutions, and offering each other much needed understanding and emotional support. There's also the Circle of Art and Lunch group for men and women diagnosed with early stage memory loss or cognitive decline. Each session offers art activities tailored to each person's interest level and offers other group activities and socialization time. I was so impressed by Suzan's programming and wished there was something similar out here. If you're in the area, please contact her for more information! And if you're not in the area but would like to start a similar program, contact Suzan anyway. She's interested in helping other areas develop much needed resources and just may head your way.

Tuesday, August 25, 2009

"I'm going to keep you."

I was visiting a patient who lives in an Alzheimer's unit. He's a sweet guy, generally rambles on about anything and everything, generally not making much sense. I do my best to follow what he's saying and respond appropriately with phrases like "oh," "really?" and "that makes sense." Today he might have mistaken me with someone from his past or he just thought that I was getting ready to travel or move on. First, he exhorted that I was going to go far. He seemed to think this was a good thing. Then he said, "I'm not going to miss you."
"You're not?" I asked, not sure where he was going with this.
"No," he said. Then he smiled and said, "I'm going to keep you."
Before I could process this little gem, he had moved on to some other topic altogether.

Veterans History Project

The Veterans History Project collects and preserves the personal accounts of American war veterans so that future generations may hear directly from veterans and better understand the realities of war. Anyone can collect veterans' memorabilia and their memories of war and then send the material to the Library of Congress.

The Project collects first-hand accounts of
U.S. Veterans from the following wars:
  • World War I (1914-1920)
  • World War II (1939-1946)
  • Korean War (1950-1955)
  • Vietnam War (1961-1975)
  • Persian Gulf War (1990-1995)
  • Afghanistan and Iraq conflicts (2001-present)

In addition, those U.S. citizen civilians who were actively involved in supporting war efforts (such as war industry workers, USO workers, flight instructors, medical volunteers, etc.) are also invited to share their valuable stories.

You can also find out if a veteran has contributed his or her testimony by searching the veteran's collections.

If you're a veteran or you'd like to volunteer to interview or transcribe testimony, click on "how to participate" to add your name to the volunteer registry. Take a look at the Field Kit for more information.

Entitlement

I've been working with a rather frustrating family the past week. I take that back. The patient A and his wife B are absolutely lovely. The daughter (C) is another story. "A" just came on to our program about 2 weeks ago and has declined pretty quickly. His wife has her own health problems and is a tiny, frail slip of a woman, who can no longer care for him in their independent living apartment. Last Thursday the hospice RN Liz called me to say it was time to talk about caregiving options. Of course, since he'd barely been on the program at this point, I had told B and C they should talk about the long-term care plan but they had not had a chance. The daughter was at work so I left her a message and told her the options: either hire a caregiver or place him in a long-term care facility (LTCF, here on out.) I talked to B at length about these two options and she was leaning towards hiring a caregiver. She didn't think a live-in caregiver was necessary at that point but did concede that she could not help him with transfers, going to the bathroom, etc. I told her to talk it over with her daughter once C was off work. Liz visited them Thursday night and talked to B and C (A was sleeping and when awake, very confused and thus unable to participate in any more decisions about his care) about what they were going to do. When Liz left, she was under the impression that the family would make a decision on Friday. But did that happen? No. I got a call around 12:30 pm Friday afternoon from the office- the daughter had questions for me about their options. I called her back and went over the options again. I encouraged her to call some home health agencies to find out about cost, if caregivers were available, and all that good stuff. We talked about the fact that the patient should not be left alone; therefore a 24 hour caregiver would be necessary. She then wanted to know how much time he had left. I gave my best guesstimate, which was any day or within the month. Then she asked about LTCFs so I talked about a few that are in the area and encouraged her to tour them and then make a decision. She said she would make some phone calls, set up tours, and talk to her mom. I told her that we had on-call social workers if she had any questions over the weekend. And I figured that come Monday morning, they would have hired a live-in caregiver or making plans to transfer him to an LTCF. Except that the daughter had not done anything.

I got a phone call from the hospice office at 11 Monday morning that the daughter had some questions for me. The office manager also let me know that the daughter had called Sunday afternoon requesting a hospice volunteer for Monday afternoon. How's that for giving us notice? I should mention that this daughter fired one hospice RN for the sound of her voice and voiced many complaints about what hospice doesn't do. It doesn't matter that she was asking for things that Medicare won't cover. She appears to be someone who feels entitled to what she wants, when she wants it, and someone who cannot be pleased no matter what you do. I called her back to address the same things I had told her Thursday and Friday. Out of the kindness of my heart, I offered to provide respite in the afternoon while she and her mom went to an appointment as it was too short notice for our volunteers. She gratefully accepted this offer and I mentally reshuffled my visits for the day. She then said her mom had decided on LTCF placement. I told her what the next steps were- tour the facilities, see if they have a bed available and when, pick one, go through their admission process, decide on transportation, let us know, and the hospice RN would make a tuck-in visit. She asked me how she would know if a bed was available. I suggested she could ask this when she called to set up an appointment to take a tour. Well, this wasn't good enough. She asked me to call them and find out if there were beds available- because she didn't want to waste her time calling them to set up a tour if they didn't have a bed in the first place. Never mind that this wastes my time! I just sucked it up, called the facilities, and then called her back. And then she called them to set up a tour time.

When I arrived at the apartment yesterday afternoon, we reviewed everything thus far. C was going to take the tours after dropping her mom back off. The plan was for A to go to whichever place she decided on today. A slept the whole time I was there- would have been nice to catch up on charting but my laptop battery died. Oh well. He'd definitely declined further since last week and in the back of my mind I wondered if he would make it through the night, much less a transfer to a facility. When B came back from the appointment, it was obvious she was torn about this decision so I spent a fair amount of time with her, helping her process the decision. She can't drive so she will be dependent on her daughter and son-in-law to take her to see her husband. It was heartbreaking! I plan on still visiting her once A is moved so she gets the support she needs.

First thing this morning I talked to hospice RN Meg to find out which LTCF it was going to be and found out a few more things. 1) C told her mom that she wouldn't be taking her to visit A every day. She's not taking any time off of work. (Meg and I were bitter about this- couldn't this daughter have taken time off of work to take care of her dad? I know this is our issue because we would respond much differently if in a similar situation.) 2) C did not want to decide on which LTCF after the tours- she wanted Meg to tell her which one. And this likely means that any little thing the nursing home does wrong will get blamed on us. Argh! 3) Meg told me that C had been appalled that I didn't just offer to call LTCFs to find out if beds were available first. Never mind that I did this for her without complaint and never mind that she didn't say one word about her "appalled state" to my face.

I arranged for an ambulance to pick A up. He's too confused, weak, and lethargic at this point to go by Medicar like the daughter was hoping. I told her what time the ambulance would come and how much it was going to be. Even though I had repeatedly told her that they would be liable for the cost since he's going to a new residence, she asked again if Medicare would cover the cost. I told her no. She then asked if there were other companies that would be cheaper. And this my friends, is the reason why families should arrange their own transportation! (Of course, C would have none of that.) I stayed calm and told her that all ambulance companies are comparable, which is true. And in my head I was thinking "there's no way I'm calling any where else for you!" As far as I know, A is safely ensconced in the chosen facility and hopefully that's the end of that.

Thanks for letting me vent. I needed to get that off of my chest!

Friday, August 21, 2009

Three Cups of Tea

Late winter my patient C received a copy of "Three Cups of Tea" from a friend. C has brain cancer and was nonverbal at this point but still facially expressive. Her husband was reading her one book, a friend was reading another one, so I offered to read "Three Cups of Tea" to her, not knowing what it was about but recognizing the cover as a New York Times bestseller. Over the last several months I have read a chapter or two at a time to C, absolutely falling in love with the story of Greg Mortenson's life. Many events led to Mortenson discovering his unique calling, including a failed climb of K2. Since 1995, Mortenson has established over 90 schools in rural and often volatile regions of Pakistan and Afghanistan, where few education opportunities existed before. C and I are now about halfway through the book. A few weeks ago my coworker Kathleen asked me if I'd read the book and then let me know that Mortenson would be speaking at Loyola tonight. Were we ever excited! Somehow between all of his work building schools, Mortenson also feels it is important to lecture and raise awareness. The talk at Loyola was very inspiring. He gave an overview of his work in Afghanistan and Pakistan, as well as his personal background. What was most interesting to me was how his book has been used to educate our armed forces and congress members. While Mortenson stated that he tries to stay out of politics, he also made it clear that he believes we must focus our energy on education and that erasing illiteracy is the only way this war will end. I would highly recommend reading the book and hearing him speak if you get a chance.

The true highlight was yet to come for me. After he was done speaking, there was a book signing. I feel like book signings can be awkward- you want to let the author know you appreciate them but you also don't want to hold up the line. Mortenson was very personable, shaking everyone's hands before signing their book. After he had shaken my hand, I let him know that I was reading the book to a patient and explained I was a hospice social worker. He stopped signing the book, looked at me, took my hand again and then thanked me for working in hospice. He was so sincere! He briefly mentioned his background as a trauma RN and also working in the burn unit, noting he had immense respect for people who work in hospice. He finished signing my book and then said he appreciated my work. A Nobel Peace prize nominee thanked me for my profession. An incredible, humbling moment. I cannot wait to tell C all about it!

Thursday, August 20, 2009

Good news

Yesterday during the social service meeting, the interim hospice director announced that my organization is going to let us hire a part-time person to do the weeknight on-call hours! Of course, the position has not yet been posted and it may take some time before anyone is hired (or even applies- yikes!), but this is the ray of sunshiney hope that I needed. Especially as I survey what I signed up for next month. I'm trying 3 weeknights in a row and kept the rest of the on-call as usual. I will either go insane or proclaim myself a genius.

Monday, August 17, 2009

Compassion Fatigue seminar

Speaking of Compassion Fatigue, I received a seminar brochure in the mail today and thought I'd share the information for those of you living in Illinois and Wisconsin. Cross Country Education is offering a seminar titled "Compassion Fatigue: Proven Strategies for Treatment and Self-Care." The seminar will be held 3 times in WI and 3 times in IL, basically spanning the month of October. The timing is ironic but I won't be able to go as I plan on heading to a 3 day conference in Indiana: "Foundations of Bereavement Counseling," which is also in October. Hopefully by October my personal self-care plan will be up and running...stay tuned for details.

Sunday, August 16, 2009

Hospice and Palliative Social Worker Certification

My organization is currently going through ELNEC (End-of-Life Nursing Education Consortium) training. While only RNs and CNAs can currently take the ELNEC certification test, the executive director mandated that social workers and chaplains also attend these trainings. They are hoping they can at least get us CEUs and that someday they will offer us certification as well. However, a few months ago I found out that there is a certification for hospice and palliative care social workers out there. (Sorry I'm behind on posting!) The National Association of Social Workers (NASW) and the National Hospice and Palliative Care Organization (NHPCO) developed the certification for BSWs and MSWs. There's the Certified Hospice and Palliative Social Worker (CHP-SW) option for BSWs or Advanced Certified Hospice and Palliative Social Worker (ACHP-SW) option for MSWs.

Basic requirements:
  • A degree in social work from an accredited university
  • At least two years of supervised social work experience in hospice and palliative care
  • A license to practice as a professional social worker
  • Twenty (20) or more CEU’s related specifically to the specialty practice
  • A commitment to compliance with the NASW Code of Ethics and NASW Standards for End Of Life Care
  • Professional affiliations with both the National Association of Social Workers and the National Council of Hospice and Palliative Professionals, a division of the National Hospice and Palliative Care Organization
There's a $165 application fee for the certification. Memberships with NASW and NHPCO kick up the cost a bit more. I'm not submitting my application until I find out what my employer will cover. Since they're paying for the ELNEC training, materials, and test costs for the RNs and CNAs, we social workers thought it would only be fair for our expenses to be covered too. I'm not holding my breath but it's nice to know this option is out there.

A Send Off

I've been working with K for about a year now, providing one-on-one counseling through our teen bereavement program. Her dad was my patient for a few months before passing away in November. She and her dad were very close and she didn't always see eye to eye with her mom. She tended to bottle up her feelings. I was able to do some prebereavement with her beforehand but most of our work has occurred after. I used a few different art therapy exercises, which took the focus off of the "serious" stuff and allowed a natural rapport to develop. I have seen K through all the holidays, birthdays, and her graduation from high school. And I have seen her progress from a reserved and reticent girl struggling with depression to someone who has faced her grief head on and developed coping skills that will take her far in this life. Friday was our last visit before she heads off to college. It was bittersweet to say goodbye and I hope on some level we'll stay in touch. She has my phone number if she runs in to any trouble but I think she'll do OK. I know she's ready for this transition and I'm honored that I could see her through this time.

Thursday, August 13, 2009

Patient Perspective

I met with a new patient on Tuesday. She is a lovely woman and I'm looking forward to getting to know her better. I'll also be providing prebereavement support to her teenage granddaughter who has lived with her grandparents and her mom since she was a baby. The patient has no regrets. In fact, she let me know that she was diagnosed with breast cancer 20 years ago when she was in her 40s. Most of her family died in their 40s. She said she feels extremely blessed to have had 20 more years than she expected, this being her third bout of cancer. She has been a huge part of her granddaughter's life; she said all she ever wanted to be was a grandma. She is determined to laugh and enjoy the rest of her days. She shared a scene from the movie "Gumball Rally." I had never heard of it before but apparently it involves a bunch of people racing across the country for money. One team is a bunch of Italians. She said the Italian driver gets in the car and rips off his rear-view mirror and throws it out of the car. In explanation, he offers this: "What's behind me is not important." She is taking these words to heart.

Wednesday, August 12, 2009

The Great Health Care Reform Debate

A copy of an email I sent out tonight.

Dear friends and family,

After receiving a forward named "National Health Care (Scare)" and watching various protests on tv, I decided to offer you the research I've done on this matter. And by research, I mean looking at unbiased fact-checking organizations and rooting out the truth. I cannot sit idly by while people equate the current health care proposal with the Holocaust and warn against Big Brother. I have a unique viewpoint as I work in the health care system. I have had countless patients with exorbitant medical bills by the time they started hospice, some of whom have had to file for bankruptcy. And these are the folks that had health insurance! I also think of friends that were recently laid off and trying to figure out if they can afford COBRA or should just hope for the best. Or the people who don't have employer-based health insurance and pay for crappy plans, just in case. I don't have the answers but hopefully I can shed some light on a few of the
arguments. It's a lot of information but we should be fully informed before we can advocate for one position over another.

First, an overview on why the health care system needs to be reformed: http://patients.about.com/od/patientempowermentissues/a/whyreform.htm?once=true&

Sojourners created a Health-Care Reform Resource page with fact sheets and a look at the moral issues of health care. I always appreciate Jim Wallis's words to the faith community and his continued call for social justice. http://www.sojo.net/index.cfm?action=action.display&item=HC09-main

Snopes.com addresses purported euthanasia counseling here: http://www.snopes.com/politics/medical/euthanasia.asp There is a huge difference between Advance Care Planning and encouraging euthanasia. The counseling sessions are not mandatory and simply provide patients with information they can use to make their health care decisions. These conversations need to happen but often do not until it's too late. When it comes to a terminal illness, a patient may decide to fight to the very end or they may weigh the options and decide to start hospice. The bill would block funding to any place that offered euthanasia or assisted suicide as an option.

Regarding arguments about health care in England, Canada, etc. Snopes provides a review of Canada's health care system. http://www.snopes.com/politics/medical/canada.asp It's hard to find unbiased reviews of the other health care systems but I'll keep looking. I will say this though: We already accept socialism in some aspects of our society. Look no further than the public school system, local library, and police and fire departments. And to be clear, Medicare (and Medicaid) are government-run health care plans. I'm not saying universal health care is the answer but I also think we can't write off countries that practice health care a little differently than we do.

Health Care Rationing: About.com has an excellent article on this subject: http://patients.about.com/od/patientempowermentissues/a/rationing.htm Insurance companies do deny claims, refuse to pay for certain treatments or medications, etc. That leaves the consumer with the decision of whether or not to pay for treatment anyway or self-ration the care. Even Medicare and Medicaid ration, in that they pay only a fixed rate for certain services. For instance, hospice gets a daily rate, regardless of diagnosis, medical need, number of visits needed, medical equipment or medication needs, etc. Did you know that your doctor or health care provider might lose money for treating a Medicare or Medicaid patient? Speaking for my employer, since we are a not-for-profit, we provide all these services regardless of our reimbursement rate but the bottom line is never far from my supervisor's mind.

My favorite political site: FactCheck.org addresses MoveOn.org's claim that people are killed by being denied insurance coverage. (See, I'm looking at both liberals and conservatives!) http://factcheck.org/2009/08/health-care-meets-shark-week/ Be sure to look at their take on the uninsured population: http://www.factcheck.org/2009/06/the-real-uninsured/ Look through the rest of the FactCheck site to get info on specific items in the proposed Health Care bill. Here's an overview of Obama's health care news conference last month: http://www.factcheck.org/2009/07/obamas-health-care-news-conference/

The idea of Senior Death Warrants and other erroneous arguments: Trish Torrey addresses an email and researches its claims on her blog "Every Patient's Advocate." http://trishatorrey.com/2009/07/09/healthcare-reform-senior-death-warrant-should-be-put-to-death-itself/ Also worth looking at is the Money First vs. Lives First argument: http://trishatorrey.com/2009/07/29/healthcare-reform-which-comes-first-lives-or-money/


I believe something needs to change. Is the current proposal perfect? No. Could they stand to take another look at this plan? Yes. Should anyone- ON EITHER SIDE- be utilizing scare tactics to support their agenda? Absolutely not. (And especially not if they are invoking God's will or calling the "other side" side evil. That drives me crazy!) To that end, I hope this information is useful to you as you sort through the debate. Keep praying for our lawmakers, for our president, and for our communities. I welcome any insights you might have.

Tuesday, August 11, 2009

Confession

True to this blog's title, I have a confession to make. Somewhere along the way, I have lost my self-confidence. This might be due to the stress of my job or just burn-out. It snuck up on me out of nowhere. Who ever sees burn out coming? And who ever knows how they will be affected? I've realized that lately I am more irritated with people when they tell me it takes a special person to work in hospice or that they could never do my job. I don't feel special. Right now, I feel like anyone could do my job. How hard is it to listen to someone? I listen to life stories, I listen to people talk about how they are coping, I listen to the unfinished business. I advise where applicable. But mostly I listen. Anyone can do that. I realize I'm being irrational as I write this. I know not everyone wants to think about death and grief when they go to work. (Although, I'm not convinced I want to think about it either- I just happen to be skilled in helping others cope with end-of-life issues.) I know that I have above average listening skills; I credit my mom on this one, thanks to her "conversation is like throwing a ball back and forth" speech. I have cards that speak of how I personally have helped families through the hospice journey. I have families on my caseload right now that are dependent on my visit. In fact, one week I wasn't able to see a patient due to a conflict and when I met with his wife the next week, she confided that she'd had to work really hard to get through the week without my visit. So I know on some level that I am making a difference. I just don't feel it right now. The on-call schedule has become more and more demanding. There is more of a blur between my professional and personal lives. And it's taking a toll. I have a vacation lined up in less than a month, which will help. I'm trying to figure out if I can group the on-call in different ways so I'm not on-call at some point every week. I'm trying to figure out better ways to take care of myself. And I'm trying to figure out how my self-confidence crept out of my life like a thief in the night so I can make sure it never happens again.

Thursday, August 06, 2009

PC Hospice

I thought this passage from "Love Walked In" by Marisa de los Santos was hillarious. The book has nothing to do with end of life issues (so far) but the main character's brother-in-law works in the field, so to speak.

"Are you a surgeon?" asked Clare, a little out of breath just from watching him.
Teo laughed. "If surgeons cut like this, they wouldn't stay surgeons for long. No, I specialize in therapeutic radiology."
"What does that mean? X-rays?"
"He's an oncologist," said Cornelia, walking up and popping a carrot piece in her mouth. "He treats cancer patients. He just doesn't like to say it."
"But treating cancer patients is good," said Clare.
"Sure it's good, but saying the word 'cancer' can put quite a damper on a dinner party. I've seen it happen. 'Pull up another chair, dear, death just showed up!" said Cornelia.
"It's like a magic spell. You say it, and instantly everyone around you gets depressed, "said Teo, chopping up a Chinese sausage effortlessly, like someone signing his name or shuffling a deck of cards.

Therapeutic radiology. I love it! Is there some PC term for those that work in hospice? I think we can all relate to the dead air that occurs after we tell someone our profession.

Wednesday, August 05, 2009

America facing death

There was a fantastic commentary in today's Chicago Tribune. In fact, a patient's husband read it this morning and was so impressed that he sent it with the hospice RN to our afternoon IDG meeting so that everyone could read it. The article "Accepting death outside the hospital" speaks in general terms at times but the author gets it.

Moore first notes that Medicare will spend $17 billion on a losing battle: preventing death. Other statistics include that 30% of Medicare's costs are spent in the last year of life, 50% of people die in the hospital, 20% of which are in ICU beds which cost 10 times as much as the daily rate for hospice. It might be easy to blame this on the government or other societal giants. But Moore notes, "we ask to be checked in. We are the problem."

"Besides, accept death? We're Americans! We're hard-wired to live fully and richly. We certainly will not go gently into that good night. Every day we cheat death. We buy automobiles with air bags on all sides, wear helmets when we bike and face infants backward in car seats. Many of us feel most alive flirting with death: We jump out of airplanes, surf with sharks and ski off-piste. We expect to be rescued from an avalanche and miracles to happen in the ER. How do we know? We've seen it on TV. That we fear death is understandable. Among human experience it's the sole unknown. But when it comes to dying, we act the same: We call 911 and leave decisions to medical professionals. We do everything medically possible to prevent death. We get hooked up. Do we fend off death? Nope."

Moore's view of hospice is a bit simplified. We've all experienced patients that do not want to sign a DNR, that do not want to discuss their wishes with their families (or vice versa), and that will never admit that they are going to die. For the sake of the article though, Moore makes her point. Hospice allows patients and families to have a say. Hospitals often do not. That again is a large generalization as there are MDs, God bless them, that are willing to have the tough conversations with families.

"Asking doesn't happen often enough, say medical experts who specialize in care for the dying. Terminally ill patients and their families need to make end-of-life choices, but they're often not asked to make them in a hospital setting. When no one asks, and no one answers, guess what? Hospitals provide aggressive, life-extending care."

I have to address one sentence in which she writes that "If you spend your last days in hospice care, your family can come and go." As I stressed to a family on the phone today, hospice does not provide custodial care. Neither will Medicare. Hospice can do continuous care or in-patient hospital stay for symptom management and respite to give the family a break. True, there are hospices that abuse continuous care, whom shall remain nameless, but when it comes down to it, families or a family hired caregiver are the ones on the frontline. There are no hospice homes in my area but it appears that most of them have guidelines about who can come to stay, either they are financially destitute or they are in the active dying stage. Someday hope my organization will have a hospice home. I think it can be a vital piece of the puzzle.

The article looks a lot at the financial cost of end of life care. And that's something we should be aware of given our health care crisis. I really think the larger issue is our attitude toward death itself. The saying goes that the only things we can be sure of in this life are death and taxes. I would say most Americans fear both. This article can hopefully be the start of a greater conversation. We need to tell our loved ones what our wishes are concerning our health, no matter how young or old we are now. We need to examine the life we live now. And if we are given a terminal diagnosis, we need to compare quality of life versus quantity of life.

Palliative Care Grounds 1.7

The latest installment of Palliative Care Grand Rounds is up at Risa's Pieces. Risa is a palliative care nurse practitioner and has assembled quite an assortment of reading for us! Check it out when you get a chance.

I am the lucky hostess for Rounds in September. Rounds will be posted on the first Wednesday of the month, September 2 in this case. Looking forward to it!

Monday, August 03, 2009

Beautiful H

I have been seeing H, a woman with CHF and dementia, for about 9 months now. She is ever positive and tries to cover up her memory problems. She rarely remembers who the hospice team members are but is always excited to see us. She also dispenses numerous compliments. She especially loves the White Sox lanyard I wear that holds my employee ID. Only she says it is a beautiful necklace. Today the hospice RN and I visited H at the same time. We were sitting outside with her enjoying the nice weather and reminiscing. Some days H can share stories about her days as a teacher, others not so much. Today she did talk a little bit about how she would feel when the school year started back up again. The hospice RN asked H about her college days and then asked for the name of the school. In typical H fashion, she said "It was nice and everyone really liked it." Such a sweetheart!

Sunday, August 02, 2009

Thought Challenging

I attended a great seminar on Thursday: "When Life Doesn't Turn Out as Planned" led by Bonnie Artman, LMFT, RN, CADC. (Family Counseling Service in Aurora, IL puts together some great in-services so definitely get on their mailing list if you're in the area.) No one would ever add a terminal illness or hospice to their life plan. Some patients have been in treatment for years before starting hospice, others are diagnosed just days beforehand with no possibility of treatment. Regardless of circumstances, part of my job as a hospice social worker is helping patients and families identify their coping skills and drawing from their strengths. This particular seminar helped me evaluate my patients' coping style, identify and eliminate barriers to progress, and learn to help patients reconnect with their inner resources. The beauty of any mental health seminar is that we practice what we preach: we try all the exercises we learn and, if we're open to the experience, we benefit from doing so.

I was particularly interested in Thought Challenging. In fact, it was so interesting that I told my mom all the steps to add to her repertoire and then led a friend through the exercise later that day! Can you tell I like counseling people?

Thought Challenging
Developing your personalized cue cards. Take 5 notecards and label them with A, B, C, D, and E. Each card will correspond to a particular step outlined below. Think of a particular concern you currently have, i.e. illness, job loss, relationship difficulty, loss of loved one, work troubles, etc.
Automatic Thought: This is your default reaction. Where do you automatically go with self-talk?
Belief: What are the core messages you received about yourself as a child? This can be based on your role in the family, life events, people who were critical of you, etc. (This step is rooted in Attachment Style as developed by Milan and Kay Yerkovich in "How We Love.")
Challenge: Challenge the automatic unhealthy thought. Where is the evidence this thought is true? How likely is this to happen? What are the alternatives? There are a number of exercises that you can use here. For instance, use "Yes buts..." to intentionally state the positive and look at what is going right. "Yes, I have cancer but I'm in remission." You can also make a True/False column to examine the evidence.
Discernment: Sift through the evidence. Take a step back. Let it percolate.
Energize: Now that you've looked at this objectively, what is something you can do? Use any anger in a positive way to move you forward. We can choose to be bitter or better. Avoid wishful thinking.

Personal example:
Problem: The on-call schedule is encroaching more and more on my personal life. (In fact, I'm on-call right now.) I'm exhausted.

Automatic thought: I'm going to burn out (if I'm not already.) I will be ineffective to my patients and families. I'm going to get sick. If I say anything at work, I'll be fired.
Belief: You need to just work harder. Pray that God will give you strength. We all have to do things we don't necessarily like. Don't focus on the negative.
Challenge:
Evidence:
True:
-I can't force change at work.
-If I stay at this pace and don't take care of myself, I will burn out and I will get.
-God will give me strength.
-Focusing on the positive will help my outlook.
-There's no administrative level support but we do take of each other as coworkers.

False:
-I won't be fired for advocating for myself.
-I can still be effective if I take it one case at a time.

Discernment: I can only do what I can do. If this situation becomes truly intolerable, then maybe it is time to look elsewhere now instead of waiting to get my Thanatology certification.
Energize: Develop a self-care plan better than my current routine. Restructure my on-call hours (Do the weeknight on-call the same week?)