Oops, Lost Again

I had to go see a client in the hospital earlier this week, and even for me it was a somewhat daunting experience. The hospital is in Dallas, and it's large. Now on this particular trip I did go right to the hospital, thanks to my GPS. In the past I can see it; it's really big, then I can't see it, turn down a one way street; oh, there it is, but it's behind me, I have to turn around....now, finally there! So, anyway, I got there without incident this week.

It's a large complex, with multiple buildings, but I did at least know which building I was going to. I actually found a parking lot, with empty spaces, right across the street. The signs to the parking lot were OK, not great. My big issue was with the signs at street level. Why do they put the names of buildings 40 feet up on the top or side of the building? OK, I know it's so you can see it from the car, but what about when you are on the sidewalk? While I knew I was right across the street from the correct building, the only entrance that looked promising had a big sign that said "Physician Referral Service Only/No Hospital Entrance", so I kept walking. The next building was definitely not the building I needed (signage 40 feet up, but readable), so I backtracked, and went in the Physician Referral door to ask how to get to the hospital. Well, guess what? In the foyer of the Physician Referral office was an elevator to...you guessed it...the Hospital!

I found my client fairly easily from there, although once I got to the unit, which seemed circular in design, there were no signs at the entrance to tell which way the numbering went, so I pretty much made the circle looking for the room.

On the way in, I had observed that there was a skywalk from the hospital to the building across the street, which was adjacent to the parking lot where I had parked. In the elevator the floor with the skywalk was labeled, so I decided to go that way. Big mistake. I got off on the right floor, saw a sign with an arrow to the skywalk--but then never saw another sign and never found the skywalk. I could see it....Anyway, I walked from one area that was clearly patient rooms, then into an area that looked like it should be off limits to the likes of me. All gray walls and office doors and people in lab coats, but no one stopped me, and then ahead I saw more patient rooms, so I just kept going. I finally found some more elevators, got to the ground floor and out of the building, and saw I was on the other side of the building. So I had to go back in, go through the lobby, then finally out the way I came in.

As I was doing all this traipsing around, I kept thinking about my client's 80-something year old husband, who takes himself there every day to be with his wife. I'm sure he parks in the same place every day and follows the route that he knows will get him to his wife. But what if that parking lot is full? What if that particular elevator is out of service? What if they move her? I'm pretty comfortable wandering around hospitals, and I can read small, ambiguous signs and usally figure them out, but not every 65 year old, or 85 year old can. I only had one hospital employee ask me if I needed help, even though I passed dozens.

It's not just the emergency room that needs to be redesigned to accommodate older adults. Hospitals are often huge complexes, with remote parking lots, and as our population continues to age, they are going to have to be more proactive in serving this older population. I didn't see much being done about it when I worked in hospitals, and I don't see much evidence of it now when I go to hospitals.

In a few weeks I'm going with some friends and colleagues to Las Vegas, where we are doing a presentation at the American Society on Aging conference. We are going to teach people how to teach age sensitivity to others. This is just a first step. I hope some of you will consider joining me on this trip toward better accessibility for everyone.

ER Follow-Up

Here is a comment I received from a colleague regarding my last post about the cutting edge ER in Maryland:

I spent Saturday morning in the emergency room at "Memorial Hospital" (the name has been changed to protect the guilty) because my ward had fallen and had cut her head. The nurse was awful insisting that she “settle down” so they could do the stitches. I kept telling the nurse that she has dementia and that her agitated stage was normal. I asked if they could give her something to sedate her. The nurse said they did not sedate patients for stitches and that she was just going to have to relax otherwise they would not be able to do anything. What an experience. Fortunately, the doctor came in, saw what was going on, had her sedated, an stitched her up. When we got her back to the nursing home, we discovered her hip was very swollen and bruised – something they did not see in the emergency room. Wish they had an emergency room like the one in the article she could have gone to.

One of the many things that is upsetting about this story is that my colleague is a social worker; she is someone who knows how to be an advocate, someone who "knows the system", and yet in this case had no influence at all with the nurse. If she can't get the professional in this instance to do what is right and best, how can someone without her skills and knowledge advocate for a loved one in a similar situation?

My initial response to my colleague was that this is the very reason I think all nurses and social workers, and really all health care workers, need mandatory training in geriatric issues. The nurse appears to have been more concerned with protocol than with listening to the patient or to the patient's guardian. This nurse's actions seemingly fly in the face of one of the basic tenets of medical ethics: Do no harm. Luckily for the patient, the ER doctor was able to place her needs ahead of protocol, and did what was necessary to make a frightening experience less so.

A Cutting Edge Emergency Room

I was driving to work this morning, listening to NPR like I usually do, when a most interesting story came on. It was about an emergency room built especially for seniors, so of course I listened with extra interest ( you can find the text of the story at http://tinyurl.com/ce8oku).

This ER is at Holy Cross Hospital in Silver Spring, MD. One reason the hospital decided to build this special ER is because according to a federal survey, only infants go to emergency rooms at a higher rate than those over age 75. This was a new statistic to me, but not surprising. I do know that people over age 65 use other health care services at a much higher rate than the rest of us, so it only stands to reason that this is true of emergency rooms.

One quote from the story that had me cheering was made by geriatrician Bill Thomas, who helped design the ER. He said, "Good care for older people teaches us how to take good care of everybody." I could not agree more!

Where Shall We Go for Dinner?

I am fortunate that my mother is still living; in fact, she lives with me. As she has gotten older, I see that certain things have become more difficult or challenging for her, and often times for me as well. And lest you think that because I work in the field of aging I cope with her changes any better than the rest of you, think again! It doesn't matter what your job is; if it involves your family, your knowledge and professionalism often just disappear.

One thing that we both enjoy is going out to eat, but it is also an activity that can be incredibly frustrating. Let me illustrate with a recent experience:

We got to the restaurant, and there were actually some handicapped parking spaces available, so we parked. The parking lot had something of an uphill slope, and we had to walk to the end of the walkway to get to the ramp, than up a steep ramp to enter the restaurant. Mom has bad knees, so she had to hang on while we negotiated all this.

Once inside the restaurant, the hostess started to take us all the way to the back of the restaurant, so she obviously did not notice Mom's trouble with mobility. I had to ask if we could sit some place closer to the front, and she was able to accommodate this; not all hostesses will. We received our menus, but the combination of dark, romantic lighting and small print made the menus difficult to read. There was of course music playing, but I can't really say that it was background music. It was front and center music, and because Mom is hard of hearing, it made conversation difficult. I'm not sure when restaurants decided that diners don't need to talk to each other, but I think it coincided with the prevalence of cell phones and blue tooth technology.

The practical result is that there are some restaurants we just don't go to anymore. Many are simply too loud to allow an enjoyable experience. Some only have booths, which are difficult for Mom to slide in and out of. Dining out should be a pleasant experience, but I find it frustrating when I have to analyze every potential restaurant for barriers.

I have a brother who manages a restaurant, and he tells me that he is constantly struggling with the owner over lighting and music volume. I think until we all start doing our part to educate restaurant managers and owners of these issues, and on a constant basis, we won't see much change.

Life Care Planning

I am approaching my second anniversary with Katten & Benson, an elder law firm in Fort Worth. When I came to work here, I had never heard of life care planning in the context of an elder law firm.

Life care planning as I knew it was a concept I was more familiar with in rehabilitation settings. An example is the young person who suffers a spinal cord injury in a car accident. Depending on the exact injury, there are certain medical issues that can be anticipated, such as recurrent urinary tract infections, possible skin breakdown, or shoulder problems if the person is able to transfer independently. There are also known equipment needs: a custom wheelchair and seating system, catheter supplies, a wheelchair van, etc. Even durable equipment like the wheelchair or van will have to be replaced every few years due to normal wear and tear. The life care planner considers all these needs and helps the client manage the settlement so that the goods and services required are paid for by the settlement, for the rest of the client's lifetime.

Life care planning in an elder law firm, it turned out, is not much different. Rather than working with people who have had traumatic injuries, we are working with people who have chronic medical conditions, such as dementia, Parkinson's, diabetes or heart disease, and we try to anticipate the needs and get goods and services in place.

Now, let's think about everything that might happen if you are diagnosed with Alzheimer's disease. From a legal standpoint, you certainly want to make sure your estate planning is in order. If you've done estate planning, we review it to make sure it's what you want. Powers of attorney are particularly important , because you want to make sure you have identified the people you want to handle financial and medical decisions. You might even want to take the additional step of designating a potential guardian, in the event guardianship is needed as the disease progresses.

A good financial review and Medicaid planning might also be needed. If you have limited income or assets, it's a good idea to know what will need to be done in order to qualify for Medicaid. Medicaid is complicated, and an attorney will best be able to advise you about issues like gifting, estate recovery, and protecting assets for a community spouse.

As an Elder Care Coordinator it's not my job to provide care, but it is my job to help you get care. The options can be overwhelming: Do I need help at home? What kind of help is available, and who pays for it? When do I need to consider assisted living? What will happen to my spouse? Is the doctor listening to me, and do I really understand what the doctor is telling me? These are all things I can help with.

It can be reassuring to know that you have someone you can call and talk to about a variety of topics. Sometimes I'm going to validate your thinking, and other times I will have to tell you it's time to consider something different. And sometimes I'll just sit with you and be supportive, so you know that you're not alone.

It's Never Too Early to Plan

Back in the early '90's I went on a wonderful sailing vacation in the British Virgin Islands with a group of friends. We spent time researching charter companies, we researched the islands themselves, we planned menus and even took groceries with us. Once there, we shopped again for provisions, we read maps and charts, and we plotted the course for our two weeks in the islands. Before we ever got there, we knew we wanted to go to Foxy's on Jost Van Dyke, Cane Garden Bay, made famous by Jimmy Buffett, and the Baths on Virgin Gorda.

All in all, we probably spent more time planning for and anticipating this vacation than we actually spent on the vacation. I suspect many of you have had similar experiences, whether it's a vacation trip to Disney World or a camping trip to Big Bend.

I bring this up because I heard somewhere recently that many people spend more time planning a vacation than they spend either on planning for retirement, for later life health issues, or how to manage finances in later life.

This was something I had never thought of before, but as I have been thinking about it, I'm sure there is a lot of truth to the statement. One thing I have learned is that it is never too early to plan for anything, especially something as important as retirement, which has a huge impact on quality of life. Another thing I have learned is to plan for the worst, and hope for the best.

As part of a Life Care Planning Law Firm, this is what I help people do. The Life Care Planning concept is designed to help the older adult with a chronic disease process plan for the future. Traditionally, we have dealt with chronic illness as a series of reactions. We feel bad, the doctor prescribes medicine, we get worse, we go to the hospital, maybe we have surgery, maybe we go home; and the cycle starts over again. Too often the patient is a passive participant in this process, with little input or decision making capacity. My goal is to help people take responsibility for their health and health care needs, and to become a more active participant in the decision-making process.

In future posts I'll give some examples of how this new way of planning has been able to help people.

The American Way

There was an article in the New York Times today titled "A Front-Row Seat as a Health Care System Goes Awry" (http://tinyurl.com/7y8urf). The article is an interview with Dr. Robert L. Martensen, a former ER doctor. Dr. Martensen has written a book called “A Life Worth Living: A Doctor’s Reflections on Illness in a High-Tech Era.” I have not read the book yet, but I will be interested to see what his reflections are.

One thing he does talk about in this interview is the American way of dying. I have seen what he talks about far too many times, and I'm glad to see that at least one doctor recognizes the disservice that happens too often as patients and families face end of life issues. Dr. Martensen talks in the interview about doing ethics consults where there is no hope of recovery, and yet the doctors involved are reluctant to tell families this, in the name of keeping hope alive.

I will never forget the family I worked with some years ago. I don't even remember the initial problem that brought their mother to the hospital, but by the time she reached my unit she had several systems failing. This was shortly after HIPAA was enacted, and up to that point no one had talked to the family at all about what their mother's condition or prognosis was. When I took the intiative and talked to them about her condition, they were so relieved that someone was finally talking to them they didn't even care it was bad news.

A few days later, the physician agreed that a hospice referral was for the best, and I ended up having to talk to family about this over the telephone. While the way I had to deliver the information was less than ideal, the family was just glad that someone was finally telling them what to expect and what needed to happen next. I was able to get her transferred to an inpatient hospice unit, and as happens so often, she died just a few hours after getting there.

Dr. Martensen feels that doctors should be realistic, and I agree completely. I have seen 91 year old people put on dialysis, and people with end stage lung disease put on ventilators. I know that it is hard to tell people that there is nothing more than can be done, other than comfort measures; I've had to do it. I have also seen how hospice can be a tremendous support for patients and families, and how it can allow people to have the good death that Dr. Mortensen talks about.

It is my hope that as we start looking at ways to repair our broken health care system, we can work to make sure that more people have the option of a good death made available to them.