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Patient Advocacy Spotlight: Healthcare Planning

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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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Patient Advocacy for Comprehensive Heart Health

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patient advocacy heart and stroke

February is National Heart Month so now is a  great time to celebrate our amazing cardiovascular systems and learn a little bit more about how to keep our hearts healthy. Even if you have heart disease or have suffered a heart attack or stroke, there is a lot you can do to keep your system as healthy as possible. Aging Wisely’s patient advocates are here to help with information, resources and health management services.

HEART facts…did you know?

  • Every day, your heart beats about 100,000 times, sending 2,000 gallons of blood surging through your body (a kitchen faucet would need to be turned on all the way for 45 years to equal the amount of blood pumped by the heart in an average lifetime).
  • Laughter really may be great medicine: a good belly laugh can send 20% more blood flowing through your body.
  • Don’t ever claim men don’t have big hearts! An adult woman’s heart weighs about 8 ounces, an adult male heart about 10 ounces.

Prevention, health management and safety are all part of a smart heart plan. Here’s a holistic plan for keeping heart healthy and some ways we can help in each area:

  • Eat a healthy diet. A well-balanced diet keeps your body strong and your cardiovascular system healthy. This shouldn’t feel overwhelming…even small changes can make a big difference and a healthy diet can be a tasty one. The American Heart Association recommends: eating an appropriate number of calories for your activity level, eating a variety of foods from all the food groups (emphasizing whole grain foods/fiber, fruits and vegetables and getting at least a couple servings of fish/week), and eating less nutrient-poor foods. These tips are especially important as we age because our calorie and nutrition needs change. Nine out of ten Americans consume too much sodium, which increases risk for high blood pressure–check out this infographic about sodium consumption and ways to reduce intake. Aging Wisely’s patient advocates can refer you to professionals who can create a nutrition plan for you, can set up meal delivery or home caregiver services to ensure you have easy access to healthy meals that you enjoy and can help you monitor your nutrition intake and make changes.
  • Get sufficient physical activity. We work closely with In-Home Fitness, a great group of personal trainers who specialize in older clients and helping individuals rehabilitate. We’d love to set up a consultation with them for you. We can also help with all kinds of resources for staying fit and set up caregiver visits to help keep you on track with regular activities. Some of our EasyLiving home care clients go out dancing each week or get a ride to their local fitness center or swimming pool. We want to keep you doing what you love (and staying physically and mentally healthy at the same time)!
  • Manage stress and lifestyle factors. Quitting smoking is an important component of better health. If you need help with smoking cessation programs and support, we can offer advice and resources. As holistic care managers, we emphasize quality of life and overall well-being. Small changes in your lifestyle and connecting to healthy activities can be a vital part of a healthy, happy life. Physical activity and creative outlets can protect against stress.
  • Be knowledgeable and know where to go for help. Check out the information from the American Heart Association: know the signs of a heart attack and stroke, prevention guidelines and understand your conditions (we’ll be bringing you the key information throughout the next month in our blogs and newsletter). We help filter through the information available to bring you reputable sources, expert referrals and the latest health news.
  • Get good heart and medical care. Practice preventative medicine (did you know Medicare now covers most preventative care and screenings with no copay?) and talk to your providers about your risk factors. We can refer you to specialists and help you prepare for doctor’s appointments. Coordinated care produces better outcomes…that’s what we’re here for!
  • Get help when you need it. Every individual should have a Vial/File of Life prepared so that emergency medical providers can access the information they need to help you. You might also want to consider a personal emergency response system for your home. If you live in an assisted care facility, your care manager can help ensure your chart is updated and key contacts are listed so your family and providers are notified if there is a problem or changes. We can help you when there is an emergency, with on-call services for Aging Wisely clients. There is nothing worse than trying to navigate a medical emergency without help and support. We can be there throughout the emergency, hospitalization (and discharge planning) and rehabilitation to help guide the way and ensure you understand what is happening and your options.

Give us a call at 727-447-5845 for help in any of these areas! We welcome your comments about what information you would like to see about heart health (and if you have not already signed up for our monthly Wise Words newsletter, you can sign up right on our home page or contact us with a request or comment).

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Patient Advocacy Spotlight: End of Life Care

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elderly patient in hospital

Sally Abrahms at AARP is one of our favorite bloggers. She covers eldercare issues on her blog, often highlighting interesting programs and news related to aging and caregiving. Sally recently shared a post about a new study on end of life issues. Some of the big findings of this end-of-life views survey include:

  • 66 percent of respondents think a patient should be allowed to stop treatment and die under some circumstances.
  • 31 percent disagree, saying health professionals should do everything possible to save a patient’s life.
  • The “do everything” group has increased 9 percent since 2005 and 16 percent since 1990.

The group was fairly evenly divided on physician assisted suicide, with 47 percent in favor and 49 percent disapproving of laws to allow a doctor to prescribe lethal drugs to a terminally ill patient. The survey goes in to a lot of depth on various related topics, and shows the wider divides on these issues when respondents are broken down by ethnicity and religion.

Respondents also have different opinions when looking at what they would want personally, with preferences varying by hypothetical circumstances. The study shows for example, “57% say they would tell their doctors to stop treatment if they had a disease with no hope of improvement and were suffering a great deal of pain. And about half (52%) say they would ask their doctors to stop treatment if they had an incurable disease and were totally dependent on someone else for their care. But about a third of adults (35%) say they would tell their doctors to do everything possible to keep them alive – even in dire circumstances, such as having a disease with no hope of improvement and experiencing a great deal of pain.” The latter percentage has gone up, partly because more people elected to express an opinion on the issue (versus being undecided). At the same time, there’s a growing percentage that say people have a moral right to suicide (particularly when in a great deal of pain with no hope of improvement).

Obviously, these issues are very personal and potentially polarizing. A person’s background can have a big effect on his/her views on this issue, but the decisions are also greatly dependent on the circumstances. Perhaps the uptick in responses also shows that more people have thought about these issues and formed an opinion than in the past. This may be due to increased discussions, awareness and exposure (particularly as more people serve as caregivers, they see these issues played out with loved ones and may have the opportunity to form more crystallized views).

As Florida patient advocates, our team works with many clients facing chronic and terminal illnesses. Many of our clients come to us toward the end of their lives, while we work with others over a number of years throughout different stages of care and illness. This survey further brings to light some important points about end-of-life care and decisions. From this information and our patient advocacy experience, here are some take-away lessons on end of life care:

  • These decisions are very personal and often situation-dependent. Therefore, it is important to have continuous conversations about care issues as circumstances change. A patient advocate can help facilitate the conversation and get critical information from providers so that patients and families can make the most informed decision.
  • Advanced care planning and end-of-life care decisions are not a “once and done” issue. Completing and advance directive form, appointing a healthcare surrogate or saying you do/do not want certain measures in your living will are all only a small part of this process. Those who have cared for loved ones with chronic illness or served as patient advocates know this well. Multiple trips to the emergency room for small injuries or repeated pneumonia may lead to a discussion about continued treatment versus treating these issues as well as possible at home (or at the ALF or nursing home). When a different illness or injury comes up, this may lead to a different decision. When it comes to technologies, there may be times in a pattern of illness when a surgery or technology makes sense, weather for potential to extend life or for comfort, while at other times the same decision may not seem advisable. Treatment itself may change the process…such as for the cancer patient whose body is depleted by chemotherapy and thus not able to withstand the latest trial or the person who received radiation and is therefore not a good candidate for surgery to that area.
  • Understanding the circumstances, in quality of life terms, is the most important information for the patient and family to have. Patients need to understand prognosis…both likelihood of survival as well as what that survival will look like. What side effects are to be expected? What probable complications and long-term changes will occur? What help will the person likely need after treatment? There are often many variables to weigh. A professional patient advocate can often help you get these answers and break it down in to understandable terms (as well as review them with you as often as needed). A doctor’s office or hospital room with attending medical professionals is often the start of this conversation but should not be the end. The patient and family need time, when feasible, to make these tough decisions.
  • Practitioners need to take time to understand the patient/family perspective. This means having cultural awareness of different religious beliefs and cultural taboos which may be influencing both the conversation and the decisions. Fortunately, as patient advocates with social work training and a holistic viewpoint, this is an area where the Aging Wisely team shines. We understand the importance of assessment, both as a document and a process that continues. We know that it is important not only to know what diagnoses a person has, but their beliefs, their family situation, their mental health and emotional issues…and much more.

End-of-life decisions are part of a wider spectrum of care decisions that many patients and their caregivers will have to make. The conversations around these decisions are vital and good support from a professional patient advocate can facilitate the process. If your family needs help with patient advocacy…from advance care planning to navigating treatment and setting up a care plan through end of life/palliative care…give Aging Wisely’s award-winning patient advocates a call at 727-447-5845.

*Image courtesy of Vichaya Kiatying-Angsulee/ FreeDigitalPhotos.net

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What is a Patient Advocate?

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A professional patient advocate is someone trained to help individuals (and their families) navigate the often complex healthcare system. Many family members and friends act as an advocate on a regular basis as a loved one faces a hospitalization, health crisis or chronic illness and treatment path. However, a professional advocate such as a care manager offers experience, training and in-depth knowledge of how to ensure the best care and pathway to good health and quality of life.

As stated by the Professional Patient Advocacy Institute, “The cost of healthcare increasingly is the responsibility of the individual consumer, which has made consumers more and more cognizant of the true cost of services and the value of traditional sources of care and information. Yet still today, the healthcare system is not set up like other commodities where comparisons can be made easily. To provide advice when faced with healthcare challenges, an emerging group of healthcare professionals known as patient advocates are positioned to assist consumers in making informed decisions while providing guidance, advice and direction in navigating the complex healthcare system.”

What are some of the ways a professional healthcare advocate helps?

*Providing a professional assessment and recommendations for resources, education and care plan options.
*Reviewing your chart and medical records to identify any concerns, questions and to help you and your family understand your health situation and options in lay terms.
*Accompanying a patient to appointments, treatment, ER visits for care continuity. Helping to formulate questions for providers and ensure good communication.
*Helping organize your medical information and create an online, personal health record.
*Assisting during key transition periods (such as hospital discharge, transfer to a care facility, or a switch in providers, where most problems occur) to ensure continuity and anticipate and avoid concerns.

When does someone use a professional patient advocate?

*When recently diagnosed with a chronic illness or acute problem–to locate good providers, evaluate options for treatments and handle the emotional and practical impacts of the diagnosis.
*During key transitions or health crises such as an Emergency Room (ER) visit, hospitalization, hospital discharge to home, inpatient rehabilitation or choosing a care facility.
*On an ongoing basis, especially when managing a chronic illness, multiple diagnoses or some form of dementia, to ensure continuity of care and be a liaison between providers, patient and family.
*To help in organizing records, putting together a care plan, creating an online personal medical record and to generally get a better handle on one’s medical situation and be proactive in managing chronic conditions.
*During end of life care, to support patient and family in decision making, emotional support and navigating options.

What are the benefits of a professional patient advocate?

*When you work with an independent advocate, such as our geriatric care managers, you get an independent assessment, someone who works for you and can ensure you get what you need.
*Expertise in the healthcare system (as well as eldercare, social services and related support services).
*Professional training and specialized expertise in the areas you need–someone who can quickly point you to resources and has knowledge of some of the issues you might not even anticipate.
*Emotional support for you and your family. Health crises can be emotional and it can be difficult to manage the practicalities and make clear decisions when facing these emotions. A professional advocate is your sounding board.

Who are professional patient advocates?

Patient advocates come from a variety of backgrounds within the medical world. Some may work for insurance companies, employers or healthcare systems or providers. Others, like our Aging Wisely care managers, work directly for the individual and family–objectively, independently–navigating a range of healthcare systems and providers and providing patients with continuity.

Our Florida geriatric care managers not only have strong professional backgrounds (both academic and experiential) in social work, gerontology, and case management, but continue to pursue specialized training areas. Our team offers experts in areas such as end of life care, Multiple Sclerosis (MS), Alzheimer’s/dementia, transitions to care facilities and much more. To read more about our professional care management and patient advocacy staff, we invite you to review our team section.

Contact us today so we can answer all your questions about patient advocacy and to find out how we can help if you or a loved one is facing chronic illness, a healthcare crisis, or just want to be assured the best quality of care.

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Mission Statement

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.