Earl Scruggs was one of the first inductees in the International Bluegrass Music Hall of Fame. He won 2 Grammy Awards, has a star on the Hollywood Walk of Fame and received a Lifetime Achievement Award at the 50th Grammy Awards.
Did you know?
Scrugg's work (with Lester Flatt and singer Jerry Scoggins) was immortalized as the theme song to the TV show "The Beverly Hillbillies".
Join us today at - http://tweetchat.com/room/dwdchat
March 29th, at 3pm when we guest host Death with Dignity's TweetChat for a discussion on Advanced Directives.
Discussion topics -
1. What are some of your experiences with advanced directives?
2. How do you support families conflicted when there are disagreements based upon culture, moral beliefs, or superstition?
3. How do you support families making decisions for loved ones when there is not an advanced directive in place?
4. What are the things advanced directives do right? What could they do better?
5. How will advanced directives change in the future? How will they become more approachable?
We hope to see you there.
Firstly, the weaknesses of all advanced directives forms are that they are paper forms that can be lost, damaged, or difficult to locate when the time comes. While tattoos are not for everyone, the story of Joy Tomkin in England, who had her DNR end-of-life wishes tattooed over her heart is intriguing. It’s a successful move as far as making her wishes known. I don’t think her wishes could be any clearer really. (See links below for photos and story.)
While the main goal of any advanced directive is to make one's end-of-life wishes known, we spent some time reviewing and weighing some of the benefits and weaknesses of the three most popular forms: POLST, 5 Wishes and an Advanced Directives form.
• Form used statewide means that medical/emergency responders will be familiar with it.
• The bright colors of the POLST forms should make them easy to locate.
• The hotline that Oregon’s POLST answers is a secondary backup to the forms, which also helps to ensure that final wishes are honored.
• As the form itself states "No form can address all the medical treatment decisions that may need to be made."
• It is meant for those who are already ill or at an advanced age. (Healthier or younger individuals are not able to make use of the form.)
• A physician is required to sign the form to validate it. (This means the physician must agree and confirm the patient’s wishes, or the patient will not be allowed to even file the POLST form.)
Advanced Directive Form
• This form breaks down different stages of the patient’s health/illness into 5 categories: "Close to death", "Permanently Unconscious", "Advanced Progressive Illness", "Extraordinary Suffering" and "General Instruction"
• The form is clear, easy to read and follow, and seems the best choice for the patient to clearly check off his/her wishes with additional lines to add a extra instructions/information.
• Any two witnesses can sign for the patient to confirm his/her wishes (except his/her present doctor.)
• The patient can appoint a health care representative to make decisions for him/her.
• This form may not be as familiar or visible t emergency responders.
• The form is not as succinct and straightforward as the POLST form.
Five Wishes Form
• This form covers more of the patient’s needs: "medical, personal, emotional, and spiritual".
• It promotes dialogue between the patient and his/her loved ones.
• The form has a wide variety of treatments that the patient can simply cross-out if she/he disagrees with it.
• The form is aesthetically pleasing and includes convenient wallet cards.
• There is too much text and the form takes up 12 full pages.
• This form would be difficult for medical personnel to follow.
• Some states require notarization in addition to 2 witnesses, making the form invalid without it.
Forms Best for Each Individual/Entity
• Best for Medical Personnel = POLST
• Best for Patient to fill out on his/her own = Advanced Directive
• Best for Assisting a Patient to fill out = 5 Wishes
Advanced Directives Discussion
Join us on March 29th, when we guest host Death with Dignity's TweetChat for a discussion on Advanced Directives. We hope to see you there.
References (Read More):
Joy Tomkins Story - http://www.dailymail.co.uk/news/article-2034647/Joy-Tomkins-81-resuscitate-tattoo-chest-PTO-inked-back.html
POLST Forms - http://www.ohsu.edu/polst/programs/sample-forms.htm
5 Wishes - http://www.agingwithdignity.org/five-wishes.php
Advanced Directives - http://liv-will1.uslivingwillregistry.com/forms.html
In "Dancing with Rose: Finding Life in the Land of Alzheimer's" by Lauren Kessler, Ms. Kessler takes work as a Resident Assistant in a care facility for people with Alzheimer's. Although Ms. Kessler starts out at the care facility with the intent to make posthumous peace with her mother while learning enough to publish a book on Alzheimer's, Ms. Kessler soon becomes enmeshed in the lives of her residents. She builds relationships, grieves at the loss of others, works to cater to each person's specific personality and desires, and ends up keeping the job far longer than she ever imagined.
Ms. Kessler, who began her journey with many pessimistic views on Alzheimer's given the poor relationship she had with her own mother when her mother had the disease, does an about-face. Her initial negative views on Alzheimer's change, as she begins to express the disease as a complex and unique condition requiring patience, understanding, compassion and adaptability from caregivers. She learns to work within its confines and bravely shares both her successes and failures with her readers.
Ms. Kessler, the author of the book, is the main character and the one through whose eyes we get a glimpse at all the other characters She is an author, on a caregiving assignment in a care facility, observing and interacting with residents who experience the effects of Alzheimer’s. In addition, Ms. Kessler is a mom, holds advanced degrees, and lost her own mother to Alzheimer’s.
The other characters, as portrayed by Ms. Kessler, are fun and multidimensional. She makes it clear they are authentic people, living real lives; they just happen to live in a care facility because they need some assistance due to memory loss. Although there are quite a few characters Ms. Kessler makes reference to, for the sake of simplicity, these are the characters we found the most intriguing.
Ella – A large and quiet woman, whose only interaction with Ms. Kessler, affects the author deeply.
Eloise – A kindly soul who loves hugs. She has a local daughter who seldom visits, and usually complains about her mom’s care when she does.
Frances “aka Calm Guam Frances” - A veteran resident assistant at the facility and Ms. Kessler’s trainer. Frances is an understanding woman, known for being calm, compassionate and keeping everything under control.
Hayes - A former engineer and tall, slender man, who is constantly cold. He is always dressed well thanks to his loving daughter and often asks, “What’s next?”
Jasmine – A hard-working, single, young mom, and trusted co-worker of Ms. Kessler, who is determined break out of her minimum-wage job to improve her life.
Marianne – An independent, “tall attractive, well-dressed woman” (p. 79) who “believes she is an administrator” at the facility (p. 85).
Rose – An unconventional woman who does exactly what she likes and treats all the other residents of the facility like one big extended family.
Alzheimer’s as Hopeful and Positive
Throughout the book, Ms. Kessler portrays Alzheimer's as a hopeful experience. Sometimes, she even poses it as a mere inconvenience. For instance, when Marianne forgets when lunch will be served, and has to ask again twice more, Ms. Kessler does not see this as problematic. She instead praises Marianne's former successes, "This is a woman who graduated from college in 1948, a woman who figured out how to be a feminist while Betty Freidan was still working it out. Does it matter really, that she forgets when lunch will be served?" (p. 91).
Even when Ms. Kessler has a negative experience with a resident, she doesn't let it frustrate her. In fact, she relies upon the many positive interactions with the other residents to outweigh the few bad experiences. At one point, when an especially challenging resident, Rose, snuck into Hayes's room and "smeared her greasy, cookie crumb hands all over" his bedding, Ms. Kessler is clearly agitated at the extra laundering that had to be done (p. 101). However, she recovers quickly by focusing on the positive relationships with other residents. "I get a hug from Eloise. I pour Marianne a fresh cup of decaf. I kid around with Jane. I find my rhythm again" (p. 102). Ms. Kessler’s positive relationships with other residents help her to maintain good composure during the more difficult times.
Patient Centered Caregiving
Ms. Kessler tailors her care and interactions to the individuals she is caring for. She explains her fascination with her patients "I enjoy their company. Their dementias and delusions, their personalities, are fascinating and distinct. Figuring out who they are and what makes them tick is intellectually and emotionally challenging. It is also deeply satisfying" (p.93).
With resident Hayes, Ms. Kessler makes the connection that as a former engineer he needs "every process broken down into small steps" because it "must be how he lived his occupational life" (p. 95). She then tailors her care of him; "I will treat him like the methodical, systematic, organized engineer he was" (p. 95). She proceeds to explain every step in her care processes to him, which she finds helps comfort him by alleviating more of his concerns.
When introducing herself to resident Marianne, Ms. Kessler foregoes her normal greeting of "patting an arm or rubbing a back" (p.84). Instead, she matches Marianne's professional demeanor and formality and shakes hands. She also stays within Marianne's reality, asking "what would be appropriate questions and respond[ing] in appropriate ways if she actually were an administrator here" (p.86). Validation therapy is the approach she finds is helpful in working with Marianne (p.87).
Residents as Individuals
Ms. Kessler encourages us to see beyond the disease; to see people changed by Alzheimer's as individuals. Ms. Kessler also sees her residents as people, with personal lives and specific interests. In reference to a neighborhood with a few swinger couples, she says, "Officially, this is neighborhood 4, but Jasmine and I and the other RAs call it, with wonder and amusement and not a hint of condescension - 'Maplewood 90210' or 'The Old and the Restless'" (p. 78). She respects that residents have a right to explore their sexuality and to be in private relationships with other residents.
New Insights into the Lives of Family Caregivers
While Ms. Kessler’s book was centered mainly on caregiving within a memory care facility, she did touch on aspects of family caregiving. Ms. Kessler’s book illustrated just how much work it is to care for persons with memory loss and how varied the needs of residents can be, from those needing help with every aspect of living to individuals needing just helpful reminders. Ms. Kessler’s book also demonstrates how families can continue to care for their loved ones even after they are being assisted in a care facility by providing them good quality clothes, visiting them often, and maintaining good relationships with the care facility staff.
An Insightful and Inspiring Read
As a good friend likes to say, "You reap what you sow" and persons with Alzheimer's are definitely one great example of that. The openness, positivism and willingness to roll with the punches, as Ms. Kessler finds and expresses in her book, can make visiting and caring for persons with dementia a wonderful experience.
PORTLAND, OR — “Love abounds” surrounded by his family Dr. Peter Goodwin has died peacefully using Oregon’s Death with Dignity Act, a law he campaigned hard for years to enact. He called it “his greatest legacy.” Dr. Goodwin was a family physician at Oregon Health & Science University since 1985. In 2006, Dr. Goodwin was diagnosed with corticobasal ganglionic degeneration, a rare terminal brain disorder. He said, “I feel grateful, but not privileged, to be able to die with dignity. To approach death according to one’s own values and on one’s own terms is not a privilege, but an essential human right.” Before his death, he reflected on his life in an interview saying."We just haven't come to terms with the fact that we're going to die, all of us, and to make concessions to that is really giving up hope," Rather, in his view, when at death's door, "the situation needs thought, it doesn't need hope. It needs planning, it doesn't need hope. Hope is too ephemeral at that time." "I don't want to go out with a whimper. I want to say goodbye to my kids and my wife with dignity." Dr. Goodwin was 83.
The world has lost another great creator. Legendary comic book artist and illustrator “Moebius” died of cancer today March 10, 2012 at age 73 in Paris. Jean Giraud was born in Paris, France. The name Moebius was the pseudonym he used since his early science fiction work. He was the visionary artist, illustrator, behind such films as Tron, The Abyss, Willow, and The Fifth Element. His work has inspired a generation of young artists who spent countless hours teaching themselves to draw by copying images of Blueberry, and images from “Arzach” and “The Airtight Garage”. Moebius was also one of the original founders of the magazine “Heavy Metal”.