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Aging Wisely March 2014 - Aging Wisely

Patient Advocacy Spotlight: Healthcare Planning


patient advocates

We hope you have enjoyed the information from our Aging in America conference presentation on “A Better Approach to Eldercare Planning“. An important aspect of that planning process is healthcare planning. With National Healthcare Decisions Day coming up on April 16th, it is a great time to reflect on the importance of healthcare planning and its key components.

To frame the issue, here are a few interesting facts from the National Healthcare Decisions Day website:

  • Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.
  • Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.
  • Having a living will was associated with lower probability of dying in a hospital for nursing home residents and people living in the community.
  • Patients and families are often not fully informed of the relevant risks and potential benefits of artificial nutrition and hydration.

Did you know? The Federal Patient Self-Determination Act requires all Medicare-participating healthcare facilities inquire about and provide information to patients about advance directives (states also mandate such requirements for various healthcare entities, such as home healthcare and senior care providers, under their regulations). Yet, as we can see from the statistics above (and our anecdotal evidence as patient advocates, working with clients and healthcare providers day in and day out), this is just a small step in the right direction. Many gaps and misunderstandings remain in this complex process of healthcare planning and decision making.

Though this is a complex topic, there are some key steps you and your family can take. Here are some tips from our advocates about both advance care planning and decision making:

  • Get the key legal documents in place. Execute advance directives such as a living will and healthcare surrogate (also known as healthcare power of attorney). A durable power of attorney, though it covers finances and other practical decisions, is also a vital part of this planning process as these types of decisions often interrelate. Make sure to keep these documents in a handy place and provide copies to loved ones who are involved in your care. Get copies on the records with your healthcare providers.
  • Talk about it. In reality, the conversations should come first. Sharing what you wish with your decision makers is vital to help them do their job should they have to act on your behalf. Talking with others can also help you work through your beliefs and priorities. This is not a single conversation, of course, but an ongoing one. The parameters and the way you feel will likely change. There are some great resources at the National Healthcare Decisions Day website (check “resources for family conversations”). Our geriatric care managers include advance care planning as one component of our comprehensive assessment, to find out the status of client’s legal documents and also offer help with these conversations. However, the patient advocacy extends over time as the client’s health changes. The advocate can not only encourage and mediate conversations, but help ensure clients and families have the information they need to think through the options and consequences.
  • As mentioned above, asking the right questions is a vital part of the decision making process. If your family has prepared as mentioned, having the right information at the time of the decisions is the next step. This means asking healthcare providers to explain risks and benefits and asking for help when you don’t feel you really understand the prognosis and realities. When you are ill (or the worried family member), it can be difficult to process the information. The medical terminology is confusing to begin with and the decisions are often made under pressure. This is one reason why hospitals have developed resources like palliative care teams and ethics committees. This is the area where most families find huge benefits to having an independent advocate by their side as well. When you are diagnosed with a chronic disease or even in the initial stages of facing a more acute condition, gathering the right information up front can help you get the right plan in place and anticipate some of the future decisions.
  • Know where to turn for resources. The National Healthcare Decisions Day website is a great place to learn more, and the web can also be a good place to research your loved one’s condition or a specific procedure or treatment. However, the web is also full of junk and can be a very scary place when you look up a condition (just try typing in some minor symptoms and see the potential diagnoses the web holds for you!). Seek out the recognized disease-specific organizations and experienced healthcare entities for legitimate information (your healthcare providers can often tell you the sources they’d trust). This also means putting together a healthcare team that is best for you…both in expertise and in personality. You need to have good partners in your care who work cooperatively (this means you too!). Your Aging Wisely care manager can help you build this medical team, as well as serve as a liaison to ensure coordinated care.
  • Take a moment to revisit your goals, prognosis and plan. Everything can be so rushed when there is a medical emergency or urgent situation. Sometimes this will just be necessary, but it is also important at some point to pause and think about things (and ask those questions). We hear from adult sons and daughters time and time again who say, “I didn’t realize Mom was having all these tests and treatments. When we talked about what was going on, she didn’t really understand why. It went against everything she wanted.” The elderly parent is often spending most of their time in a doctor’s office, undergoing treatment or tests. Sometimes, this is the reality of fighting a condition, but many times it is because no one stopped to evaluate the situation. Your medical providers generally want to do what is best for you and comply with your wishes, but in this fast-paced system this sometimes requires an “advocacy pause” to think through the plan moving forward.

Need help with patient advocacy in Florida? Our award-winning* team is here to help! Call us at 727-447-5845 or contact us online for SOLUTIONS WHEN YOU NEED THEM!


*Nationwide winner 2011, Patient Advocate Organization, Professional Patient Advocacy Institute

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A Better Approach to Eldercare



eldercare team

This client circle of care depicts the care team involved with an elderly or disabled client (also known as “the patient”, “Mom”, “Dad”, “Aunt Betty”, “resident”, “care recipient”). As our founders, Linda Chamberlain and Dr. Kerry Chamberlain, presented on “A Better Approach to Eldercare” at last week’s Aging in America conference, the focus was on how to harness the power of this care team to ensure the approach remains centered on the client.

The first stage in this approach is the beginning conversation. Too often, conversations around eldercare are done within silos and are focused by what the particular specialty wants to cover. Rather than working together (and starting with the client’s priorities), the individual may be blind to what is going on in the client’s life outside his/her office. Unfortunately, this can turn the experts’ best solutions in to failure.

In “A Better Approach to Eldercare”, Linda and Kerry discussed using a comprehensive questionnaire to begin this conversation. This serves to help the client and family gather facts and information that will be needed to make informed decisions and gets information organized to spur the conversation (i.e. bring up “issues”). While a professional may not immediately address all the issues (or ever address them in his/her specialty specifically), having a broad sense of information guides the conversation, helps inform proper recommendations and points to issues that need to be addressed to make the whole puzzle work. It is also vital to understand what the client’s and family’s main concerns are. A good questionnaire and initial meeting help draw out these, often unspoken, concerns.

Some of the top concerns and issues elderly clients might have include:

  • Ability to stay at home
  • Costs to stay at home
  • Trying to keep children happy and not rock the boat
  • Refusing children’s care
  • Remaining the parent, even when ill
  • Loss of dignity
  • Not being a burden
  • Choosing the right people to name in their legal documents
  • Ensuring loved ones understand their wishes and recognize the boundaries

Some of the common family concerns (besides the major underlying thread, which is usually worry over Mom or Dad’s well-being and a desire to ensure it moving forward) we see in our work include:

  • Children concerned parent cannot afford desired choice
  • Children concerned regarding their potential need to help pay or provide for care
  • Family turmoil and breakdown over lack of direction by parent
  • Sometimes it comes down to one of the biggest decisions which is whether to spend all the money on any care needed or protect assets and choose Medicaid/public benefit options (particularly when long term planning was not done in advance).

With a proper understanding of these issues and a good conversation started, the professional can now share his/her expertise with the client and family to help them understand topics that need to be addressed and implications of different decisions/options. Check out our checklist of items to review during eldercare planning with the client and family, for more detail.

Coordinated eldercare planning centered around the client offers an approach which not only works, but helps all members of the client care team do a better job. The benefits of coordinated planning include:

  • Choices for the client and family (planning opens up more options)
  • Reduced suffering
  • Peace of mind
  • Maintaining dignity and independence
  • Bringing together the power of your circle of care (rather than dividing their strengths and potentially working at odds)

For more information on eldercare planning, contact us at 727-447-5845 and read our blog for regular updates and information. You can email us to receive our monthly Wise Words™ newsletter or to meet to talk further about coordinated eldercare planning for your loved one or client.


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Why Better Eldercare Planning is Essential


ASA conference 2014 Aging in America

Attorney Linda Chamberlain and Dr. Kerry Chamberlain, founders of Aging Wisely, will be presenting this week at the American Society on Aging’s 2014 Aging in America conference. Bringing together their broad experience in eldercare over the past fifteen years running Aging Wisely and EasyLiving along with their specialties of Elder Law and Hematology/Oncology,  Linda and Kerry will discuss “A Better Approach to Eldercare Planning”. Why is this topic so vital?

  • There are over 65 million caregivers in the U.S., providing greater than $450 billion worth of (unpaid) services.
  • Total estimated aggregate lost wages, pension, and Social Security benefits of caregivers of parents is over $3 trillion dollars (per average caregiver the losses add up to just over $300,000).
  • Over 1.4 million Americans live in nursing homes (only 5% of individuals under age 85 reside in nursing homes, but 11% of those over age 85 do) and more than 735,000 U.S. residents live in Assisted Living Facilities (54% of ALF residents are 85 and older)
  • The median daily rate for a semi-private room in a Skilled Nursing Facility in 2013 was $207 (up about 3% from prior year, from the Genworth Cost of Care Study). The national median rate for an Assisted Living Facility (monthly rate for 1 bedroom apartment) was $3450.

A few additional statistics about family caregiving:

  • Caregivers spend on average 20+ hours per week providing care.
  • If the caregiver lives in the home with person, care increased to 40+ hours per week.
  • The average duration of caregiver role is 4.6 years.
  • About 15% of caregivers live an hour or more away from the care recipient.
  • In the MetLife/National Alliance for Caregivers Study of Long-Distance Caregivers, despite an average distance of 450 miles and 7.23 hours of travel time one-way, long-distance caregivers reported substantial regular personal contact with the person they were helping; 51% reported visiting at least a few times a month.
  • About 1/4 of these long-distance caregivers were the only or primary caregivers and many had to rearrange work schedules (and spent an average of over $300/month on caregiving travel and other out-of-pocket expenses).

All of these statistics point to the necessity for good eldercare planning. Needing some type of assistance (and the related caregiving duties for the younger generation) has become relatively common to the aging experience, with longer life expectancies and increased chronic conditions. The way we plan and prepare can have a big impact on our choices and help both the elder and family members. As aging professionals, we can be allies in helping families through a better approach to planning. Too often, aging issues have been approached in a fragmented way, mostly from the perspective of the specific program or entity leading the conversation. We will share more in next week’s blog post from Linda and Kerry’s presentation, which is aimed to help participants:

  • Understand how a holistic approach to the client/family system results in more successful solutions.
  • Know the key components of a successful care consultation and how to approach an initial conversation.
  • Learn how to avoid breakdowns in communication, misunderstood goals, and missed opportunities by using a coordinated planning approach.

If you are attending the Aging in America conference, we hope to meet you there! Linda and Kerry’s session will be held Thursday, March 13th from 4:30-5:30. We hope you will consider taking part! You can also follow some live updates on our Aging Wisely Facebook page and Twitter feed.

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Patient Advocacy Spotlight: Helping Doctors Help You


elderly doctor's visit
March 30th is designated as National Doctor’s Day. This holiday originated in the 1930s when a doctor’s wife in Georgia organized a luncheon celebration for her husband and colleagues in appreciation for their hard work. March 30th is significant because it marks the day in 1842 that anesthesia was administered for the first time.  The holiday was officially signed in to law by President George Bush in 1990.

There are over 700,000 physicians and surgeons providing care to patients throughout the U.S. As President Bush stated in his proclamation, “Common to the experience of each of them, from the specialist in research to the general practitioner, are hard work, stress and sacrifice. All those Americans who serve as licensed physicians have engaged in years of study and training, often at great financial cost. Most endure long and unpredictable hours, and many must cope with the conflicting demands of work and family life.” We wish to share our own thanks to all the doctors who work so hard to help our Aging Wisely clients. We appreciate having quality healthcare providers in our community and being able to work together as patient advocates to ensure the best for our clients.

The pressures of modern medical care create certain realities about the doctor’s visit. As patients and advocates, we can take steps to ensure our doctors are able to provide us the best care possible. Here is some research on doctor’s visits and our “take away” advice:

  • One study found the doctor interrupted the patient on average 23 seconds in to him describing his symptoms. In 25% of cases, the doctor did not ask the patient what was bothering him. And, as patients we don’t do very well on our side either. In a Dutch study, about half off patients hadn’t determined what they wanted to discuss before a visit to their family physician and 77% did absolutely nothing to prepare. Patient/advocate take-away: Prepare and put your notes in writing. You need to be organized to ensure you cover your key concerns. Doing a little thinking before the appointment helps you communicate more clearly and allows you and the doctor to cover necessary information in the time allotted. It can really help to make notes as you experience symptoms/in the weeks leading up to the appointment to be able to answer questions about frequency, when symptoms occur, difficulties you have had with following prescribed treatment, etc. Would you make an appointment with an attorney or CPA without thinking about what you wanted to ask or hoped to get out of the visit?
  • In another study, doctors spent an average of 1.3 minutes conveying crucial information about the patient’s condition treatment (which they estimated had taken them over 8 minutes) and much of the language used was highly technical. Take-away lesson: take notes, ask follow up questions and feed back what you think you understand to the doctor to clarify. This is also why having a professional patient advocate with you is valuable. The advocate can serve as a liaison to ensure you understand, as well as take notes and talk to you afterwards to ensure understanding and follow-up. If you aren’t clear on something, you advocate can review the instructions with you and contact the doctor if you are having any problems.
  • The average wait time (per a 2011 NYTimes article) was 23 minutes and the average time with the doctor was 19 minutes (visits haven’t decreased as much as patients think, but “meaningful time” with patients often has due to various administrative demands). Patient advocacy take-away: Use your wait time constructively. Review your notes and anticipate questions. And, think about comfort ahead of time…don’t show up hungry, bring a bottle of water and maybe some personal entertainment (a book, ipad, knitting) so you don’t have to count on the office’s magazine selection. Try to plan your appointments for times when the office has the least delays (often the first appointment of the day or after lunch).
  • The more chronic conditions a patient has, the less satisfied they tend to be with a doctor’s care. This likely has to do with coordination issues. Having multiple conditions (and practitioners) increases complexity for both doctor and patient. Patient advocacy lesson: the role of care coordination is essential for patients with multiple conditions. For many patients, this role is one best done by someone else, whether a family member or professional advocate. Keeping good notes and updated records is essential (an online system such as the Caregivers Touch tool that Aging Wisely uses is especially effective). Doctors often have a bit of a detective role, but don’t make the situation any more mysterious than it needs to be!

Think you could use help with care coordination or advocacy? Want to know more about how we can help your loved one in Tampa Bay get the best care possible? Give us a call at 727-447-5845 to discuss ways we can help.

Aging Wisely was selected as the top “Patient Advocacy Organization” in 2011 by the Professional Patient Advocacy Institute

Our advocates serve clients throughout Tampa Bay, Florida and families all across the world

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Our goal is to enable every individual we work with to live the most fulfilling life possible, with utmost dignity, focusing on their physical, mental, spiritual, family and financial wellbeing.