Most people have heard the admonitions regarding end of life planning: Let your wishes be known! Not surprisingly, we tend to avoid the nitty-gritty of our mortality and that of family members’…hoping perhaps that we will all be among those who go quietly while watching cable. Should you have some level of control and choice about your death and the time immediately preceding, what care would you like to have?

When we review the advanced directives list of “choices” it seems natural to want cardiopulmonary resuscitation (CPR), fluids, and food-preferably chocolate. However, for elders with complex health conditions including late stage dementia, the consequences of these measures are not necessarily compatible with long term survival, or a peaceful and pain-free death.

Myths and misinformation regarding end of life care abound. Consider the DNR (Do Not Resuscitate) order. CPR was developed to rescue individuals experiencing sudden unexpected cardiac arrest due to a heart attack, drug overdose, hypothermia, drowning accident, or other reversible condition. However, bone crushing chest compressions, cardioversion and intubation are all part of the process now widely used to treat arrests in people with severe underlying illnesses and poor overall likelihood of survival. In the majority of cases, studies show that CPR is not the happily-ever-after success usually portrayed on the medical shows on television.

On one level this is a no-brainer, it’s television, right? However, in the absence of opposing imagery and narrative, we tend to go with what we “know.” One study reviewing 97 episodes of the television shows “ER,” “Chicago Hope,” and “Rescue 911”  in which CPR was depicted revealed that 75% of persons survived the immediate arrest and that 67% survived to hospital discharge,  However, a review of actual outcomes is reported in a Canadian study by Titlayo, et al published in Clinical Geriatrics .They found that of  247 hospitalized patients who experienced cardiac arrest and underwent CPR only 22.4% of those with witnessed arrests survived to hospital discharge, and only 1% of those with unwitnessed arrests survived CPR to hospital discharge.

Similar outcomes are described in many other studies, revealing the actual consequences of a “Full Code” for elders with severe illnesses. And yet, to proclaim “DNR” somehow seems like giving up. Charlie Sabatino, of the American Bar Association Commission on Law and Aging notes “The message behind the term ‘do not resuscitate’ is predominantly negative, suggesting an absence of treatment and care. The reality is that comfort care and palliative care are affirmative and, for these patients, more appropriate interventions.”  Maybe it is time for a new set of initials on the chart such as “MMC” for Make Me Comfy!” In the United Kingdom and some other countries the initials “AND” for “Allow Natural Death” are used, and do indeed convey a more positive and affirming stance regarding end of life care.

When patients with end-stage Alzheimer’s disease stop eating or experience significant difficulty swallowing, enteral (tube) feeding is inevitably considered. An extensive review of existing literature by Finucane and associates published in the Journal of the American Medical Association concluded that there was no evidence that tube feeding among these patients prevents aspiration pneumonia, prolongs life, reduces incidence of pressure sores or infections, improves function, or provides palliation.

Another end of life care challenge is the hospitalization of late stage Alzheimer’s nursing home patients.  A study in the New England Journal of Medicine Sept. 29, 2011, edition reports that nearly one in five nursing home residents with advanced dementia experiences burdensome transitions in the last 90 days of life, such as moving to a different facility in the last three days of life or repeat hospitalizations for expected complications of dementia in the last 90 days of life.

Study co-author Joan Teno notes that “Such patterns of transitions are burdensome, particularly since the overwhelming majority of family members state the main goal of care is comfort.” The transitions are burdensome because they raise the risk of medical errors and interrupt continuity of care for patients who often experience significant distress when they are suddenly removed from their familiar surroundings and caregivers.

While some hospitalizations are unavoidable, many are unnecessary, and reflect the inefficiency of our health care system, according to Dr. Teno. Conditions such as pneumonia, urinary tract infection, dehydration, and others could effectively be treated in a properly equipped and staffed nursing home.

Unfortunately, burdensome transitions may be driven by the way Medicare pays nursing homes for patients who have been transferred to a hospital for at least three days and then qualify for skilled nursing services paid by Medicare rather than Medicaid upon their return. Also of interest is the finding that different areas of the country had varying rates of these burdensome transitions. In Alaska, the percentage of patients experiencing at least one burdensome transition was just 2 percent, while in Louisiana it was 37.5 percent, the investigators found. What’s more, areas with those higher rates of burdensome transitions had higher rates of poorer outcomes.

The notion that “just because you can doesn’t mean you should” rings true in today’s healthcare arena. As we seek to identify best practices, based upon sound evidence to manage end of life care for elders with late stage dementia, it becomes increasingly clear that we have much to learn. There are currently more than 1.8 million Americans with end-stage dementia, characterized by the person’s inability to recognize friends or family members, lack of communication skills, and dependence with activities of daily living such as dressing, and bathing. This number will swell as baby boomers crest into the terminal phase of Alzheimer’s disease.

When Alzheimer’s patients become unable to speak for themselves their families agonize about doing the right things in the moment, and long after. Specialists in palliative care and bioethics are now a part of every hospital’s clinical team, and may be included to help families and physicians make informed, appropriate care decisions for patients with advanced dementia. It is first and foremost important to ask the care team “What is the GOAL of care?”

In spite of the math, foretelling a community densely populated with families struggling to care for loved ones, ours –and most communities are entirely unprepared for the challenge. A most appropriate and caring solution, a residential Alzheimer’s Hospice, has yet to evolve in spite of ample need. Such a resource could provide immeasurable benefit for east Tennesseans taking part in the long, arduous and lonely Alzheimer’s journey. In the meantime, elders and their families should take advantage of the Medicare benefit that provides for a thoughtful, informed discussion with your physician regarding end of life care for you and yours. 

Excellent books available in our library:

• Hard Choices for Loving People by Hank Dunn
• Caregiver’s Path to Compassionate Decision Making: Making Choices for Those Who Can’t    by Viki Kind, MA

Join your Life Care Team for this special holiday presentation on

Thursday, November 17, 2011
4:00-5:00 PM
4931 Homberg Drive
RSVP 865-588-3700

Thursday, September 15, 2011  from 4:00 to 5:00 PM

 4931 Homberg Drive; Knoxville, TN 37919

RSVP: 865-588-3700

for this special educational program on Thursday, August 11, 2011
from 4-5:30 pm at 4931 Homberg Drive in Knoxville.
RSVP 865-588-3700

Join us for a Special Presentation: Getting the Most from Your Doctor Visits

THURSDAY JULY 15 from 4-5 pm; 4931 HOMBERG DRIVE, KNOXVILLE, TN 37919

RSVP 865-588-3700

Call the Director of Nurses!

Entrusting your fragile, dependent loved one to strangers upon whom she will depend for the most basic and intimate necessities of life, most likely for the rest of her life, is a difficult process. There are oodles of layers and dynamics of all kinds which complicate our best intentions to be effective advocates: Guilt? Sadness? Helplessness? And oh so, so many more issues.

Nobody likes to complain, and some folks are downright intimidated by the process. Fears of retaliation, even when entirely unfounded are powerful drivers of inaction… “I don’t want to make waves or upset anybody…it might come back on Momma.”

 “I hate to bother them…it’s such a little thing…” Instead of the direct communication route, some families will step in and take care of issues or needs themselves with nary a whimper. The intent is to be understanding/ forgiving/ helpful because staff [always] seems so overworked. Or a more irritated and righteous “Never Mind, I’ll do it myself!” approach may be adopted. There’s also pouting, sarcasm and silent suffering or just plain wimping out. Befriending staff, offering tips, or bringing goodies in hopes that this will curry special favor and result in more or better attention for loved ones will not succeed.

Complaining to the CNA’s, other families, or your neighbors and friends about the terrible care is yet another ineffective approach to addressing care concerns.

 So where does the rubber meet the road? The Director of Nurses.

Nursing Home Administrators are of course very interested in your concerns. But to address those issues, they’re gonna call the DON! So start there. Yes, these are very busy people indeed. Worried about bothering them with what might be a kinda petty complaint? Don’t! There is really no such thing. My experience has been that folks tend to save up the little stuff. While the intent is to overlook/ “understand” and/ or forgive, in truth those items are stored.  Then, when enough of these “little things” occur, and /or add a big thing or a different thing happens later, that first lil ol’ thing is marched out too. This usually takes place in the wake of a now massive wave of unhappiness.

 Unfortunately, the lil-now big-thing is past history, and evidence and accountability may be inaccessible. This is extremely frustrating to all those highly motivated to address the problems.

 It is great to bring goodies. Don’t expect a thank you note, and don’t expect better care. Show respect to care providers –but remember: you aren’t a hostage. As in any relationship, finding the good and blowing on those coals will help to warm the room, and encourage better care from the staff.

 You may also contact the facility Ombudsman. Information on how to do this is provided on admission and posted prominently in all facilities. However, the Ombudsman is gonna say: “Have your spoken to the DON?”

 Here’s the thing: We have a limited number of nursing homes in our community. While some are fancier than others, the rules and regulations and expectations for care are exactly the same for them all. And whether fancy or plain, they all face the same challenges as healthcare providers to a fragile, vulnerable population with very complex needs.

 When care does not meet expectations reporting those problems must be as prompt as possible. Remember how the Sheriff always liked it best when the trail was warm? This enables more effective fact-finding and accountability.

 I like putting my concerns in writing. This documentation formalizes your expectations for accountability and provides a tidy way to keep track.

 Ultimately, ”success” takes a spirit of being on the same side. Remember: It is in everyone’s best interest that the nursing home staff succeeds. This means timely, direct, respectful communication. Start with the Director of Nurses.

A book we have found to be really helpful that we provide to our Life Care Plan clients is called 20 Common Nursing Home Problems and How to Resolve Them, by Eric Carlson, Esq., available through the National Senior Citizens Law Center. Mr. Carlson recommends: “Be the Squeaky Wheel!”

Kumbayah!

The first time I saw this lil’ bit o’terrorism was years ago in the admissions office of a nursing home. Yes, really. Ugh!

Inclined to consider meaning and motivation, my efforts to understand and somehow articulate the significance of this “message” in that setting made my head hurt then, as it does now.

But this is what I really want to share: For the most part, neither you nor your kids will “choose” your nursing home. Your nursing home will more likely be choosing you. Now I encourage you to continue to try to discover some reasonable motivation to be nice to your kids, but in this one regard, they mostly won’t get much of a say.

 “We cannot meet your needs” may be the admission director’s response to families with loved ones who have a history of “behavioral issues,” such as agitation, combativeness, or just peaceful exit seeking. Those with complex, major wounds and those with some forms of Methicillin-resistant Staphylococcus Aureus (MRSA) or Vancomycin-Resistant Enterococci (VRE) have needs that some facilities are unable to adequately address. Ventilator or dialysis patients, those undergoing chemotherapy treatment for cancer, and even organ transplant, AIDs patients, and others needing expensive drugs may have difficulty finding placement.

 Another patient category having trouble finding placement? Surprise, surprise: those who are not in need of skilled care. Waiting lists for admission to intermediate/ long term residential care in the nursing home often either extend beyond most folks’ life expectancies or just don’t exist. Some Medicare Advantage Plans are also not accepted at some skilled care facilities.

Most folks think that when the time comes, they will just mosey on over to their chosen facilities and sign up. Think again. And tell your kids to behave on the tour! Rowdy family members can jinx an admission as well.

 So what to do? When care in the nursing home –either short or long term- is going to be necessary, your New Best Friend is your hospital discharge planner! Request an introduction as soon as possible after admission to the hospital when you know –or even suspect- that additional care will likely be needed at discharge. These folks really know the long term care “lay of the land” and are able to guide families in accessing the best available care. And remember, they too may hit many a dead end before finding the right placement. Breathe deeply.

Faith United Methodist Church will host “Caring for Your Parents” on Sunday, March 27 from 2-4 pm.  Adult children with aging parents will especially benefit from this free program sponsored by the Office on Aging’s One Call Club, Covenant Health Senior Services, the Mercy Health Partners Geriatric Assessment Program, and the Elder Law Practice of Monica Franklin.

“Caring for Your Parents” is designed to educate, support and empower caregiver children. Our panel of experts consists of Diana Nelson, Geriatric Nurse Practitioner; Monica Franklin, Certified Elder Law Attorney; the Reverend Dr. Paul Humphrey, and Susie Stiles, Licensed Clinical Social Worker.   Discussion will include information on the changing needs of older adults, the challenges of the caregiver child, the legal and financial issues at hand, and the role of faith and community in coping with caregiving.

Faith United Methodist Church is located on the corner of Dry Gap Pike and Rifle Range Road at 1120 Dry Gap Pike, Knoxville, TN.  (865) 688-1000 www.faithseekers.org RSVP at 524-2786

WASHINGTON — Two federal courts have ruled that the Obama administration is using overly strict standards to determine whether older Americans are entitled to Medicare coverage of skilled nursing home care and home health care.
Medicare will pay for those services if they are needed to maintain a person’s ability to perform routine activities of daily living or to prevent deterioration of the person’s condition, the courts said. Medicare beneficiaries do not have to prove that their condition will improve, as the government sometimes contends, the courts said.
The rulings are potentially significant for many people with chronic conditions and disabilities like multiple sclerosis, Alzheimer’s disease and broken hips. Skilled care may be reasonable and necessary and covered by Medicare even if the person’s condition is stable and unlikely to improve, the courts said.
This is MOMENTOUS! Or at least it should be. Where are the fireworks and the brass bands? Since this is a clarification of the rules rather than a rule change, it is immediately effective. I am wondering if anyone is noticing any ripples in referrals and treatment plans?
Go to www.medicareadvocacy.org for the entire NY Times article, more information about Medicare coverage, dealing with barriers to access, and even denial appeal kits.