| 6 March 2015
Dear Interested Readers,
What Is and Is Not Inside This Week’s Letter and Some Housekeeping
There were so many things that deserved comment this week. In the end I chose to pass on Governor’s Baker’s budget that includes cuts of several hundred million dollars a year to Medicaid and significant shifts in state employee health insurance costs. You can read about it.
https://www.bostonglobe.com/metro/2015/03/04/baker-release-state-budget-proposal/vvlxeag3nIgWccVB5KmZ8J/story.html
I also passed on writing about the presentations before the Supreme Court in King v. Burwell, but you can read an insightful analysis of the case from the Brookings Institute:
http://www.brookings.edu/blogs/up-front/posts/2015/03/02-explainer-king-burwell-aca-supreme-court?utm_campaign=Brookings+Brief&utm_source=hs_email&utm_medium=email&utm_content=16347742&_hsenc=p2ANqtz--zG_uJtP7TAh3FdHSKbk6le1akw4_kFbz8SOpTzZxob6STehd1fcB9ht
I could have also written about the shift that is in motion from a fee-for-service world to the emerging picture of value based reimbursement in commercial PPO products as witnessed by the changes underway at Blue Cross in Massachusetts.
http://www.bostonglobe.com/business/2015/03/05/blue-cross-vastly-expands-quality-based-payment-systems/Hl2Dqj7aWCcp7LQpCWeljK/story.html
I passed on all of these options in favor of an opportunity to spend my weekly of allowance of words on two stories that discuss the care of the elderly and the issues of caregivers and the benefits that well integrated systems of care can offer families. As good as the care is evolving to be for some, issues like the King v. Burwell case and the financial woes of state government threaten the future of the Triple Aim for all of us and our families.
An important part of this letter is your introduction to the insightful and beautiful blog of Melissa Cronin, RN. I also want to remind you of the strategyhealthcare.com blog.There is a place on the site where your friends and colleagues can request becoming a weekly recipient of this newsletter. The circulation is growing. I hope that the conversation will become increasingly interactive and the letter will be of growing benefit to your efforts to be a part of better care.
“I can do it myself...”
Last weekend I traveled back to Lincolnton, North Carolina to visit my father and to share with him, my brother who lives with him, and my youngest sister who drove up from Atlanta, a celebration of what would have been my mother’s 96th birthday if she was still alive. Some of you know that I have learned much from the medical events in my own family and each of my trips home either adds to the story or suggests a new chapter in my understanding of how care is evolving and a clearer, fuller, more positive view of the care options that await us all in the future.
For those new to the story let me back up and hit some historical high points for your orientation. My parents “retired” in late 1982 when my Dad turned 62. In preparation for retirement he had earned a certificate in pastoral counseling offered in a combined program between Andover Newton Seminary and Worcester State Hospital. He had shown strategic insight when he took advantage of the opportunity that was available to him. His last position was a bridge to “retirement” from a remarkable ministerial career that had included leading several churches, administrative responsibilities at a state, regional and national levels, and a successful stent as the president of a small college.
This “wind-down” pre-retirement position was as the administrator for the support of Southern Baptist affiliated churches in New England and the job gave my dad both the flexibility and the opportunity to do the pastoral counseling training program while living in Shrewsbury, Massachusetts between 1977 and 1982. The doctoral level certificate enabled Dad to open an office and bill third party payers for behavioral health. On retirement my parents moved back to my mother’s hometown where he did open an office and they resided in the home that my grandfather had built in 1924 and where my grandmother lived until she died in 1981.
My dad is an interesting blend of the spiritual and the practical. He built a building next door to the county hospital and used half of it for his office and rented out the other half to an urologist who is still there more than thirty years later. When Dad began to practice he was the only mental health provider in Lincoln County and even to this day 50% of North Carolina’s counties have no behavioral health resources. He bought consultation time from a psychiatrist in neighboring Shelby County and began a very successful and interesting “retirement”. In time he began to blend his work with individuals with new and expanded work that in a secular environment would be called managing “organizational behavior”. He became expert in consulting with and leading many churches in the Carolinas and Georgia to resolution of the arguments that frequently arise in churches that have an autonomous congregational or town meeting style church polity. He was never without the opportunity to work and have a sense of purpose over the next twenty-five years.
My mother was an active partner in all that he did, functioning as advisor and business manager. (They had met as graduate students in the seminary but she had been a math major, county health worker and science teacher before going back to grad school in religious education.) She set up all the office processes on an early eighties vintage Tandy computer.
After a quarter century of “retirement”, my mother’s health began to decline in her late eighties as a combination of her cardiovascular, arthritic and gastrointestinal issues. As she declined my dad transferred more and more of his time to her care and by 2006 it was clear that taking care of her was more than a full time job and that the medical resources to manage her various conditions just did not exist in their community. Ultimately, they decided to sell their home and buy one in the Atlanta area near my sister whose daughter and daughter-in-law were both nurses. The care in Atlanta was more organized, or at least there was a greater combination of specialists in a larger hospital with more services that were near by. With the support that my sister’s family was able to provide to my father who devoted all his time to my mother, my parents were able to live independently in their own home. She survived another six years before she died in hospice care in early January 2013, two months before her 94th birthday.
During the last seven months of her life, after she initiated the “conversation” and enrolled in hospice, my mother never again needed to go to a doctor’s office. She never had another blood test, x ray or other imaging procedure, and lived a remarkably comfortable existence compared to the previous three or four years because of the assistance the hospice program gave my father and sister. The entire six years was a tour de force organized by my dad and sister and in the end the process finished with a flourish provided by an excellent hospice program. Most of the hospice care was in their home. Mom was an inpatient recipient of hospice care for less than two weeks of the seven months and those stays were used only when my father needed some respite, and at the end.
Let me interrupt our story to introduce another story that I discovered reading a fabulous blog that is a new resource for me. I suggest that the blog melissacronin.com is worth your attention. Melissa Cronin is a nurse who writes about healthcare and recovery from the perspective of a patient and an artist. Her own experience and motivation arise from the combination of her professional work as a provider of care and a horrible accident that interrupted her life with a traumatic brain injury that left her with the the scars of post traumatic stress disorder. She writes about PTSD and TBI as an exercise to increase her personal understanding of these problems and to foster her own recovery, but she also writes about her current professional activity as a nurse working with the elderly and their caregivers. In her art and work she shares the perspective of Robin Roberts, the TV personality who says her mother said, “Make your mess your message”. The piece below from the blog is entitled “Caring for Aging Parents”.
I’m a writer, first, a nurse second. I used to know what it was like to care for sick babies and children, for eight to twelve hours at a time. Though I am involved with my father’s care as his dementia progresses, and I offer input concerning my father-in-law’s medical issues, I do not know what it’s like to care fulltime for an aging parent. But many others do know – according to Metlife Mature Market Institute, in 2012, nearly 10 million adult children care for their parents. www.npr.org/2012/04/24/aging-parents
This past December, my husband and I traveled to Las Vegas, where we met his ninety-one-year-old father, Tom. It was his last wish to travel there before he passes (he and his wife used to live in Las Vegas) Tom’s frail status prohibits him from traveling alone, so my brother-in-law, Michael, joined him on the trip. Though Tom’s wife is still very much alive, her own medical issues have made it difficult for her to keep track of his medical appointments, physical and speech therapy sessions, and the medley of medications he takes on a daily basis. Michael lives with his parents. For the past several years he’s worked from home, so his parents are not alone – both no longer drive, and are at risk for falling. Michael puts aside his work during the day to hand his father his heart medication, his kidney medication, his diabetes medication, his inhaler. He prepares smoothies with protein powder for his father. He reminds him to drink plenty of water to stay hydrated. He takes him to the grocery store, the local shopping outlet, and, of course, to the casino not far from where they live.
While in Las Vegas, I watched Michael lift and transfer his father from his wheelchair to the bed, from his wheelchair to a seat at a poker machine. I watched him push his father in his wheelchair down the long hallways of the hotel. I watched him load up his father’s plate at the buffet with his favorite foods.
Michael took his father on long drives because that’s what his father wanted to do, because his father missed the mountains, the sandstone cliffs, the sixty-degree air, the orange taffy-like sunsets. Because his father wanted to visit his past, when he felt like he could live forever.
Each evening, after Tom fell into a feathered dream, Michael spent a few hours with my husband and I on the deck of our hotel-room. We talked about Tom’s dream to move back to Vegas – dreaming keeps you alive Tom says. We oohed and aahed at the sounds of night birds. We laughed at nothing in particular. We watched the full moon hover in the sky, its silver face shimmering like a newly wrapped gift.
If I could have unwrapped the moon I wonder what I would have found. I’m going to guess. Awareness: others who are caring for their aging parents need us to listen to them. They need us to be with them, even if it’s just for a moment, to dream about what is inside the moon.
My dad and sister were the “Michaels” in our family’s story of my mother’s care. My other sister, my brother and I were the “listeners” like Melissa and her husband were in her story. The role of caregiver gave great purpose to both my dad and my sister until my mother died. After her death it was soon clear that not only had my dad lost his spouse, best friend and confident of seventy years, but he had also lost his real purpose for existence.
Dad had no social supports in Atlanta other than family. He was intellectually isolated because he had given up all of his stimulating work and social contacts to focus only on my mother’s needs. Despite many offers for grief counseling from the hospice that had been so effective for my mother, he just could not connect in an effective way. My sibs and I were consumed with Skype conversations about what would be best for Dad.
It became clear that Atlanta was not the place for our dad, but how could he live alone anywhere else? Now he needed a caregiver. We all gathered in North Carolina in May 2013 at my mother’s grave to honor her on Mother’s Day. My dad’s neglect of his health was most obvious by his markedly deteriorated stability on stairs that weekend and his stories of a few “slips” at home. On return to Atlanta he fell and broke his hip in his bathroom. Fortunately, the older of my two sisters had spent the night with him before traveling back to her own work and home in Birmingham.
The next six months were pretty dreadful and included a prolonged hospital stay and the use of his entire allotment from Medicare for 100 days of rehab care. He did not want assisted living and he could not live without assistance. During this time my brother who had recently become single agreed to become a caregiver and live most of the time with our father in a family version of the “odd couple”. My brother asked only that he and dad find an appropriate home in Lincolnton that allowed each to have some space for themselves and that we all figure out how to cover him so that he could have a week each month to return to his home on St. Simons Island on the Georgia coast to attend to his own business and spend some time with his grandchildren.
To make such a decision is one thing. To execute the move and the reestablishment of all of the support systems is another. There was a house to sell and a house to find and buy and the very painful process of deciding what to keep and move and what to give up. Many of the things were not moved were still treasured for the memories of my mother that were connected with them. By the time of the move my dad had his own mounting list of chronic issues. It was clear that many, like the mobility issues, were the result of inactivity from his grief, but he still had a long maintenance list including a cardiac pacer and residual problems from a long passed total knee replacement surgery and late complications from surgery for prostate cancer.
Last May, a year after the broken hip, and just as things were settling into a good rhythm in the new home with my brother in Lincolnton, my father fell again when he tripped on a curb coming out of his pacemaker appointment. The fall fractured his pelvis and initiated another six weeks of care in the hospital and in rehab. All the gains of the last year seemed lost. Despite more than $200,000 of medical care over the previous year that was billed to Medicare and Blue Cross, not to mention all of the out of pocket expense and much time investment by family and a host of medical providers, there was more uncertainty than certainty in his deteriorating future.
The core issue was what part of his condition was due to memory loss and other cognitive issues and what part was situational depression and grief that might improve with the right combination of meds and rehab? Previous attempts to use psychotropic meds had been problematic and it was clear that the road ahead was going to be mostly a trial of rehab. It became clear quickly that the depression and cognitive issues would be best managed with the support of counseling. Experience had taught us that the liabilities of meds for anxiety and depression in any but the most miniscule doses, far outweighed their benefit.
Here is where the update really begins. Healthcare in Lincolnton had changed since my mother was forced to go to Atlanta because her needs could not be met. In the interim the county hospital was sold to Carolinas Healthcare Systems. Based in nearby Charlotte, Carolinas is a huge and growing non-profit system that employs more than 60,000 people who work in hospitals and ambulatory sites providing care in area with about a 75 mile radius from Charlotte in the piedmont region of North Carolina. Carolinas also owns hospitals in the Charleston area of South Carolina. My mother’s PCP when she moved to Atlanta was the son of her previous PCP who had been my grandmother’s doctor and a lifelong family friend living two doors away. In the interim the son had sold his practice to the Carolinas system and had become an employee of the system, as did most of the doctors in town.
Carolinas built a new hospital to replace the old Hill-Burton era county hospital. The new hospital, “Out past the 321 bypass”, is the core of an integrated offering of primary care and chronic disease services that are efficiently organized with the full spectrum of specialty practice that was not available before. More complicated cases are referred to Charlotte. The care in the area has been transformed over the past six years. There is now an integrated system of healthcare that is on one electronic platform with a patient portal. I might add that in the six year interim, Zeev Neuwirth, who was the Vice President of Practice Improvement and Innovation at Atrius Health and largely responsible for bringing Lean and Care Improvement thinking to Harvard Vanguard and Atrius Health, had moved on to Carolinas from Boston to become Vice President and CMO for ambulatory care for the system. It is a small world, is it not?
My Dad had not been effectively integrated into the system before his second fall, but he was by the time he was discharged from the affiliated rehab hospital in nearby Mount Holly, North Carolina. Back at home he was regularly seen in out-patient rehab and there were effective evaluations and management efforts of his emotional and cognitive issues between his PCP’s office and the larger system. When he came to see me for a month in late August and early September he could walk a half a mile with a rolling walker, if allowed many stops for rest. Now six months later, he independently does a mile a day while chatting to whomever might be around. He walks with a sure gait and without obvious instability, although he has accepted the advice of his physical therapist that he never leave home without his cane.
Dad is venturing out. Initially this winter he was doing his daily mile on the indoor track of the athletic facility operated by his church for the community. Those 18 laps were “boring” as he clicked them off using a counter with the enthusiasm of a kid taking cod liver oil or a Marine recruit doing pushups. A couple of months ago a new expanded supermarket opened in town to rival Wal-Mart with the same lower prices but much better decor, sporting a Starbucks, an even lower cost pharmacy, and a fancier deli section. He discovered that five laps around the perimeter inside the store was a mile. He now takes a small shopping cart and gets necessities while he keeps count of his laps by shifting a coin from his left pocket to his right at the end of each lap.
I walked with him over the weekend and discovered that employees of the store wave and some interrupt his walk to talk. The lady in the cut flower section stopped us on three of our five laps. She first stopped us just to say hello and ask who I was. The second time she caught us across the store where she was on an errand and asked my father to pray for her friend who was having a nephrectomy. The third stop was the longest delay because she wanted his advice about how to approach the store’s management about getting more hours to work. It occurred to me that perhaps he should either set up an office in the store or shift the walk to yet another venue, but it was clear that he had the time to chat and enjoyed the opportunity to serve. He is also writing some Lenten essays requested by the minister and is talking with the folks at the local hospice about being a volunteer. Perhaps he feels that he needs to give back about $200,000 worth of value to the community. I no longer hear him talking about his life being empty of purpose.
I guess the real measure of his recovery is that he is socially interactive with lots of people outside his family. He is active in his church. Church connects him with a lot of people in the community. He loves to go to the “old philosophers” club that seems to meet at a local fast food eatery most mornings where he mostly observes and offers commentary to my brother. He has developed an interest in and has been trying to get more information about a homeless man who is a regular fixture of the community, as he is seen around town pushing a shopping cart full of all of his belongings.
I wonder if the key to his recent surge is that he has a new friend who is a woman. Both my dad and my brother have established new relationships with newly single women in the community. Both ladies have experienced loss and both have been caregivers for loved ones. Dad enjoys long telephone chats, lunches in local restaurants, and regular visits to his new friend’s home. My father’s friend knew my mother quite well. Last Sunday was a treat since my sister and I enjoyed meeting the new friends of “the boys” at a Sunday dinner at a local eatery. Ironically, my mother’s old PCP (father of Dad’s current PCP) was on the premises with his new wife and we had a nice reunion.
During the weekend my brother frequently commented on his observations as a caregiver using a system that, although it is very good, still has a way to go or has many more opportunities for improvement. He summed it up with his observation, “I know they have a way to go to become really patient centered, although things are improving. When I call for Dad’s appointments or with questions that I need answered, the message is to push #1 if I am a doctor or calling for a doctor. I am told to push #2 if I am calling from a pharmacy. If I am a patient, I can push #3 and then the Mazak begins. I think there is a subtle message in the message.” His story reminded me of a resourceful patient that I once had. My patient was a leading faculty member of one of our area’s great universities and obviously had a PhD. He would always push #1 and tell whoever answered that he was Dr. “So and So” calling from his office in Cambridge. When I would come on the line he would chuckle and imply that the system had a long way to go before he could be sure he had the access he needed without his little trick.
The thematic high point of the trip occurred for me when we got in the car to drive over to the store to walk. I was a little apprehensive about being in the passenger seat next to a 94 year old driver but my dad has passed a certified driving evaluation and does have a brand new North Carolina license that will be good until his 99th birthday, almost five years from now. As he was getting into the car, a maneuver that is a little bit of an issue for him because of his knee replacement (2004) and the hip fracture (2013), I offered him a hand. He quickly refused my help with a curt but logical:
“I can do it myself. I will do it better this time than the last time I did it; and if I do it myself this time, the next time I try, I will be even better!”
It has been a long road back. I am reminded that in medical school I was taught that grief is a two-year process. I am also aware of the fact that many elderly people die in close proximity to the death of their spouses. I also believe that my father is the great beneficiary of the evolving body of information that is leading to the improved care of the elderly. Both of my parents have gotten the care they needed. My mother made the choice of comfort over continued battle. She was tired and ready for her “reward”. My dad did not know how to ask for help and our efforts were well meaning but the job is hard and at times felt impossible, even for a family that has both means and commitment. Hard is not the same as impossible and I am grateful for the host of medical professionals that have suddenly appeared on cue when beckoned by a PCP who knows the family and the patient, and works in an effective and improving system and shows by his efforts that he cares.
The care that my family has been fortunate to receive and the timely support its caregivers have been presented may not be perfect but all I need do is think back to the limited resources available in the same town and region not that long ago. The challenge now is to make care at least this good the right and the possibility of every citizen, including the man wandering the streets with the shopping cart who has a name and a history that my father now knows.
Barriers to A Better Future
The temperature on Wednesday in New London, New Hampshire rose to a balmy 37 degrees. My home is about a quarter of mile down the road that dead-ends at our house on the lake. To get to the wider world I must enter a busier connecting road for about a hundred yards before I come to a less busy road that then connects in another quarter mile to a lovely winding road that follows the shoreline of our lake for several miles before it runs into a state highway that connects with Main Street. I usually walk or jog two or three miles out and then come back over the same route. I also have no problem running in circles around tracks or small bodies of water. I just have a need to get moving every day.
For the last several weeks my little road has run through a “canyon” with snow piled three to five feet high on both sides. On this warm Wednesday there was a twenty-foot wide lake at the end of my road that blocked my way to the wider world. (The picture of the scene is the header for this week’s letter.) As I was deciding whether to climb the canyon walls or ford the lake which would surely mean that the rest of my journey would be in wet shoes that would diminish the joy of my excursion, I realized that what faced me was a pretty good metaphor for this moment in healthcare. My new barrier also made me feel aligned with all of my former neighbors in greater Boston and Wellesley who must face a lot of slush before the journey through this winter is over.
What we face as the snow melts will be a temporary inconvenience. The barriers that still lie ahead on the journey toward the Triple Aim will also surely melt in time, but between now and then we will have difficult choices that are the metaphorical equivalent of cold, wet feet. Uncomfortable, inconvenient but survivable. As I made my way around the big puddle by attempting to climb the wall of snow, my feet got wet.
Just as surely as the fact that the last pile of snow will eventually turn to water that drains away, I believe that we will find ways around the various barriers that seem to block the way to the care that we all would love to enjoy. In the interim, we will just keep scrambling along over the snow banks and around the pools of melt toward a distant goal.
|
| | |
|
