Will Your Family Need an Elder Care Advocate?

Will Your Family Need an Elder Care Advocate?

By Signe Gleeson, RNC, CCM, MS

No one should face aging and illness alone. Too often, older adults find themselves without an ally or advocate when they are most vulnerable. Illness and infirmity can diminish the best of us. This is more dramatic for older adults. It is not uncommon for an ill or hospitalized older adult to appear more confused, frail, and incapable than they actually are.

This is why an increasing number of families call on elder care advocates for assistance. At ElderCare Solutions, we support older and disabled adults and the people who care about them. Our role as elder care advocates is to help older adults achieve their goals and implement their choices when they can’t do it themselves.

Informed advocacy plays a critical role in ensuring the needs, desires and values of a disabled or older adult are recognized, respected and protected. It can be easy and expedient to make assumptions or assign a label to an older adult. It is tempting for physicians and family members to globalize an individual’s physical or cognitive limitations and to disregard the older individual’s strengths and capabilities as short- and long-term decisions are made. But as advocates, we recognize that a deficit in one area does not necessarily translate to deficiencies in other domains. For instance, an older adult who does not know the date may be well able to express his or her wishes regarding treatment.

When an individual is voiceless and/or seen with a limited perspective, the advocate gives a voice and a full sense of the person on their behalf. Advocates seek information about the individual and anticipate their present and future needs. We help to take some of the emotion out of the decisions for care, treatment and medical intervention. Part of our role is to consider the result of intervention and how it will affect the individual’s functioning.

We often see situations where a doctor may make a recommendation for a medical procedure without fully understanding the patient’s circumstances. Most people have a hard time questioning doctors. For older adults, this is particularly difficult. Family members may accede to the advice or pronouncements of professionals without questioning assumptions made with limited information or thoughtful consideration of the older individual. One of the strongest contributions we make as patient advocates, beyond our clinical skills, is to ask questions and paint a picture for the physician or family member of who this person is as an individual, how they live their life and what they value.

When to Call an Elder Care Advocate
Elder care advocates are often called in when an older adult is resisting assistance or intervention. We are also asked to assist when family members are in conflict over difficult care issues. These conflicts can arise between the elder parent and his/her children or between siblings. Our role is to be objective, provide expert assessments of the older adult’s individual needs and make specific recommendations for their care. As the advocate for the older adult, we can provide a point of view from which other family members can make decisions.

Effective advocacy involves:
- A willingness to listen to and learn about the individual/the whole person – their values and how they derive meaning in life
- A willingness and ability to intelligently investigate and even uncover options, ask questions, and, when needed, challenge assumptions and conclusions
- Being an active participant in decisions and bringing the individual into the discussion to the full extent possible.

Health care advocacy requires both fearlessness – identifying and confronting conclusions that are at odds with the best interest of the individual – and humility – openness to ongoing learning about the person and how to best discern and advance his or her needs. Health care today has increasingly become a business, in which hospitals, nursing homes and housing facilities may have interests or values that are at odds with the interest and values of the individual. That makes it increasingly important to take a “buyer beware” stance to ensure that vulnerable individuals are well served.

When Enough is Enough

“Sometimes the gentlest of breezes can topple us off the precipice.” While we all know that death is inevitable, it is difficult to accept it as such. Often we search for answers through medical procedures and technologies when the true answer comes from nature, the “gentle breeze theory”. The world of technology and a “fix it” mentality is certainly a blessing, but it can also prove to be a curse. Instead of helping families experience death as a gentle breeze, it creates a stormy and troubled time.

How do individuals and families discern when enough – testing to find the answers to the “why” of decline or illness or the “what” might be done – is enough? How do we recognize when less is more? How can we come to embrace death as a reasonable and even good option, rather than a defeat or a sign that we didn’t do enough? It takes thoughtfulness and a measure of courage.

Clearly, such decisions are among the most difficult. Personal values, the meaning of life, and view of death are critical to decision making, and as important to consider as is medical information. There is no right or wrong, and each individual family must come to peace with it’s own decisions. Some considerations, however, can help a family be more clear and comfortable with their decisions. As tests or procedures are proposed, it’s important to ask:

• “What information will be gained?”
• “How will that information guide care decisions – will it make a difference?”
• “How much discomfort will be involved?”
• “What are the risks of not doing tests?”
• “What are the alternatives to tests and/or procedures?”

Most importantly, information needs to be evaluated in the context of an individual’s life context. An individual who was very active and engaged in life may have the reasons and reserves to withstand difficult treatment and will have a very different recovery than one who was bedridden and whose pre-illness physical and mental resources were near depletion. Ultimately, it’s important to consider: “Will the medical interventions merely forestall death or will they likely provide for a comfortable and meaningful life?”

Very often health care providers are foremost in helping the family with their decisions. It is important that those providers know the person, their history and values, their pre illness life circumstances. While specialists brought in for consultation can give information about tests and procedures, they are often less able to fit the information into an individual’s life context – that is for the regular care provider AND the family to do.
Valued friends and ministers or rabbis can be an important sounding boards and sources of guidance.

Choosing to forego tests and treatment is not the same as doing “nothing.” Choosing to accept death and support the dying process is a real and valuable intervention. But doing so can seem foreign and out of sync with a culture that strives to keep aging and death at bay. The opportunity to accompany someone in the dying process can be life giving and comforting. It is an opportunity lost if it is not actively considered as an alternative to treatment. Choosing death can be part of choosing and gracefully accepting all of life.

Helping Parents and Family Work Together – A Personal View

The experience of working with my many siblings as we attempted to make the “right” care decisions with and for my mother left me humbled and gave me a new appreciation for the challenges we face. It’s a lot easier to “talk the talk” than “walk the walk”.

Our mother’s physical and mental health was steadily declining. She was taken to “experts” who advised a care setting that represented increased safety to some in our family and more restrictiveness to others.

How did we resolve our sibling differences amicably? Here’s what I learned that I think is worth passing on.

Don’t underestimate the emotional undertones in family discussions and decisions. I was surprised by the intensity of my own emotional reactions, which seemed out of proportion to events. It became clear that sometimes I was reacting as a vulnerable girl rather than an adult.

Many adults have unmet desires to be approved or to be considered “good enough” by parents and siblings. By taking the time to recognize the source of my feelings, I was able to slide into a more mature mode of interacting with my family and to acknowledge my feelings without holding others responsible. Having done so helped me to understand that some of my siblings were influenced as well by feelings that arose from long ago. The moral: Give yourself some slack and cut plenty for others.

Don’t underestimate personal communication. While email, voicemail and text messages can be wonderful tools in keeping everyone on the same page regarding facts, these tools are less effective, and maybe even harmful, in resolving emotional issues. The crucial nuances that make communication effective, such as the tone of voice or the ability to get an immediate reaction, are not available on email.

In the case of my family, I was angered by some of the email I received from siblings and felt my mother’s condition was misrepresented by some and misunderstood by others. I simmered quietly for a few days and nights, fearful that valued sibling relationships were disintegrating. The conflicts were not cleared up until phone conversations took place to “sort things out”. The moral: Make a personal connection by telephone, or if possible by meeting in person to clear the air and sweep out misperceptions.

Don’t underestimate the importance of tolerating differences. With most decisions, there are no absolute rights or wrongs. Caring people come to very different decisions. They also often come to make those decisions in different ways and from different perspectives.

Some individuals feel the new to review information in great detail and become intimately involved in making decisions. Others are glad to simply receive general updates and will delegate decisions to one or another person. Some family members make time and have energy to devote to care decisions. Others simply can’t.
The moral: Suspend judgment as you take time to listen to each other. While listening takes time, most decisions do not need to be made immediately and the investment of time can offer life-long dividends for healthy sibling relationships.

Don’t underestimate personal pride. I finally had to admit to myself and others that I was hurt my family didn’t call on me to help guide decisions. After all, I assist families with such matters every day. In my family’s case, my mother had designated a sibling other than myself with the Power of Attorney for her health care decisions. In the end, whether I agreed or disagreed, I had to remind myself that my mother trusted my sibling to make decisions for her. Perhaps the most important role I could play was to support the individual who had the burden of making the decisions. The moral: Respect each other for the important roles each of you has in the family.

Each of us can play a constructive role in helping our elders age safely and with grace. None of us can dictate how others will respond, but we can learn to be honest with ourselves and each other. When we do, be become more comfortable with each other and more productive as a family.

An Advocate and an Ally

“Here’s your medicine, honey,” the nurse said as she handed Mrs. Smith her morning medicine. Mrs. Smith politely took the medicine and then turned to me and commented, “I’ve been taking that medicine for longer than she’s been alive.” Her nurse was distracted by grey hair and a diminutive frame and did not allow for a capable and intelligent 84-year-old woman in the bed.

No one should face aging and illness alone. Too often older adults find themselves without an ally or advocate when they are most vulnerable. It is not uncommon for an ill or hospitalized older adult to appear more confused, frail, and incapable than they actually are. Family members may accede to the advice or pronouncements of professionals without questioning assumptions made with limited information and thoughtful consideration of the individual. Illness and infirmity can diminish the best of us. This diminishment is more dramatic for older adults.

Informed advocacy plays a critical role in ensuring the needs, desires and values of a disabled or older adult are recognized, respected and protected. It can be easy and expedient to make assumptions or assign a label to an older adult. Too often deficits are the focus with little acknowledgment of individual strengths and capabilities. Likewise a deficit in one area does not translate to deficiencies in other domains. An older adult who does not know the date may be well able to express wishes regarding treatment. It is tempting to globalize limitations and not give strength and capabilities their full weight as short and long-term decisions are made.

Advocates advance the best interests of the individual whom they are serving. That charge is not always so straightforward. Many of us, no matter our age, choose unhealthy or unwise practices. One can be foolish without being incompetent. Likewise, professionals and institutions – hospitals, nursing homes and housing facilities – may have interest or values that are at odds with the interest and values of the older individual.

When an individual is voiceless and/or seen with a limited perspective, the advocate gives a voice and a full sense of the person on their behalf.

Effective advocacy involves:
- Willingness to listen to and learn about the individual
- Willingness and ability to intelligently investigate and even unearth options ask questions and, when needed, challenge assumptions and conclusions
- Being an active participant in decisions and bring the individual into the discussion to the full extent possible

Health care advocacy requires both fearlessness – identifying and confronting conclusions that are at odds with the best interest of the individual – and humility – openness to ongoing learning about the person and how to best discern and advance his/her needs. Health care advocacy is not for the faint hearted. It involves an effort to acquire the required skills and the sensibilities to ensure that vulnerable individual are well served. That, in the end, is a service to us all.

Power of Attorney for Health Care: Choosing Your Agent

The selection of an agent under the Power of Attorney for Health Care should be made with thought and care. The person you choose has a grave responsibility to act on behalf of an ill or elderly individual often under very difficult circumstances.

Some important guidelines in choosing and communicating with an agent include:

1) Name someone you can trust with your life – in fact that is what you are doing.

2) Don’t be afraid of hurt feelings. Choose the individual(s) you believe will serve your interests the best. Consider emotions, but don’t let them dictate the decision.

3) Your agent should be someone you can comfortably talk with about your wishes for care during illness. These conversations are best made “around the kitchen table” and should include conversations about your values. If a prospective agent isn’t comfortable with such conversations, he/she might not be the best choice.

4) Ideally, the agent is someone who can be readily available, and emotionally and intellectually capable of asking questions and of articulating and advocating the individual’s wishes in sometimes unfamiliar or overwhelming situations.

To insure that the POA is used as intended, the agent and all successor agents should have copies of the POA as should the primary physician and a family member or members. To be most effective and meaningful, it calls for an ongoing process of communication between the individual, the agent, family members and caregivers.

During illness and hospitalization, the agent should ask the physician in charge, the “attending physician,” to write an order to “contact the agent for consents for all tests and procedures” in order to ensure coordinated communication among other specialists who may be called in as consultants.

In considering interventions, the agent should consider the ultimate goals of the care. In consenting to tests, it should be clear how the information derived from the test would be used to promote the identified goals of care. It’s very easy, in this age of specialization, to treat the symptom or body “system” and lose sight of the person. The purpose of the agent is to ensure that all decisions regarding tests and procedures are made in the context of the individual and his or her values and wishes.

The Power of Attorney for Health Care is much more than a legal document. It establishes a sacred trust and demands the courage to consider the most critical life and death decisions we all ultimately face, for ourselves and for others.

WHEN A LOVED ONE IS HOSPITALIZED – SOME TIPS

Some advice from the geriatric care managers at ElderCare Solutions. When a loved one is hospitalized:

1) Get To Know The Staff

- Will one nurse be consistently in charge of your elder’s care? If not, find out who will be coordinating care and the best time to call or meet with that person. While the physician manages the medical treatment, the physician doesn’t coordinate all aspects of hospital care.

- Who will be planning for care upon discharge? Some hospitals have social workers, or in some cases, “discharge planners”. They are planning for discharge very soon after admission and so should you. Get in touch with this staff person to give you enough time to consider options:
– Will my elder be able to be discharged to home?
– Will my elder require and be eligible for home health care through Medicare upon discharge, including
nursing care and physical, occupational or speech therapy?
– Make sure that any equipment or services are put in place before discharge to home to provide for a smooth
transition
– If my elder needs care in a nursing home, what are our options?

- Contact the doctor to determine:
– What is my elder’s prognosis/chance for full recovery?
– What treatments/tests are being considered and what are the benefits and risks of
these treatments/tests?
– What happens if the treatment/test is not done?
– Are there alternative treatments or measures that can be tried?
– What are the costs? Will the costs be covered by Medicare?
– Make sure the MD has a good sense of the pre illness functioning and all medications and treatments in
place prior to hospitalization.
– Can therapy be put in place to prevent loss of function due to inactivity?

- Designate one family member as the spokesperson and information gatherer for the family. Having more than one spokesperson can lead to misunderstanding and miscommunication.

2) Help The Staff Care For Your Elder

- Provide information about your elder that will help the staff better care for him/her – food preferences, ability to hear or see well.

- Bring a picture of your elder during healthy, active days to post on the wall – it helps staff get to know the person behind the illness.

- Ask questions. Research shows that when individuals are involved in care, recovery is improved.

- Request that your elder be allowed out of bed, even if in a chair, if the physical condition allows. Inactivity and bed confinement can lead to complications and prolong recovery.

- Bring up concerns respectfully. Most staff members want to do their best to care for your elder, but working conditions can be difficult. While protecting your elder, treat the staff as a partner in recovery. If you have concerns, bring them to managers and people in authority who can resolve them.

3) Take a Hands-On Approach

- Offer to assist with little tasks- get water for your elder, help with eating and bathing, if possible – it makes you feel useful, provides an extra measure of caring and helps the staff.

- Use touch to communicate. Your elder may be too ill or tired to talk. Silence can be golden. Sitting quietly at the bedside can bring great comfort. Try a gentle hand massage. Don’t let tubes and machines get in the way of human contact.

4) End of Life Decisions

- Make the physician and staff aware of documents regarding health care decision making. A copy of the Power of Attorney for Health Care should be provided so all staff are aware of the wishes of the elder regarding use of measures to sustain life.

- Despite the fact that hospitals deal with life and death on a daily basis, discussions about end of life and the elder and family’s wishes don’t automatically occur. If an elder is very frail and/or gravely ill, it is appropriate for the family to initiate a conversation with the physician and staff about measures that may be employed, such as resuscitation, to keep your elder alive.

5) Discharge From the Hospital

- Before discharge, request written instructions for home care, goals of any home care services being prescribed, use of medication and follow-up treatment.

- If you believe discharge is premature, talk with your doctor. If your elder is covered by Medicare, you do have the right to appeal a discharge decision. The steps for appealing a discharge decision: 1) request a formal “notice of non-coverage” from hospital personnel, before discharge; 2) once you receive the notice you have until noon the following day to contact Medicare (1- 800- 647-8089) and request an immediate review of the discharge decision. A review typically takes 24 to 48 hours – your elder will not be charged for the stay during the appeal process, regardless of the appeal decision.

How to Talk to Medical Professionals

Even the most intelligent of us can become overwhelmed in an often-unwieldy health care system, in which a variety of consultants and specialists, tests and procedures demand attention and decisions.

Most decision do not need to be made urgently, but can be deliberated. Take the time to digest the information and seek clarification as needed. Often, a “watching waiting” approach is indicated.

Most health professionals are willing to answer questions, but to make life easier for everyone, designate a capable “point person.” It’s also helpful to preface a conversation with, “ I need a few minutes of your time” or “when is a good time to talk with you?” or “who is the best person to talk with?”

The underlying question individuals and families want to consider is “What do we want to accomplish?” The answer to that question will guide further questions and decisions that are made. Remember that treatments (procedures and medications) can be effective, but not necessarily have benefit for each individual. All treatments should be made in the context of the individual, their life circumstance, other health concerns and individual values.

Some other questions to consider:

1) What conditions are you trying to rule out?

2) What treatments and tests are being considered, what information are you looking for, and how will that information impact on treatment?

3) What are the benefits and risks of treatment?

4) What is the likely outcome if treatment is declined or delayed?

5) Are there other treatments/approaches that can be tried?

6) How will we know the treatment is effective and how long will treatment be necessary?

7) What is the prognosis and chances for a full recovery? What will “recovery” look like?

Thoughtful dialogue creates a partnership that keeps the ill individual central to decision making. This partnership benefits everyone, patients and practitioner alike.

Holiday Tips for Families Visiting Elderly Relatives

After many months of separation, the holiday season brings families together to celebrate and catch up. For families with older relatives, it is an opportunity to check in and make sure that all is well. Using your visit to be a thoughtful observer will help you assess an elder relative’s well being and, if necessary, take early steps to insure that small problems do not become large ones.

ElderCare Solutions, Inc., a Chicagoland area geriatric care management practice that assists families in managing the care needs of elder relatives, suggests families consider the following questions to alert them to subtle changes that may warrant professional investigation and intervention:
- Is household maintenance up to established standards?
- Does your relative tolerate activity as he/she used to? Does he/she get out of breath, easily fatigued?
- Is your elder relative interested in participating in the family’s traditional holiday activities, such as visits to other relatives or friends or preparing special foods.
- Does your elder have meaningful outside activity during your absence that he/she readily talks about?
- Is your elder able to identify friends with whom he/she has regular contact?
- Is your elder able to move around the house easily – climb stairs, get in and out of furniture – and use household equipment without difficulty?
- Can your elder recall significant people and events?
- Is there an adequate supply of food and household necessities in the house?
- Has your elder had a significant, unexpected weight loss over the past year?
- Is your elder keeping up with health care and finances?
- Does your elder seem somehow “different”?

“Very often, problems that surface may be easily remedied with early and simple interventions,” says Signe Gleeson, a registered nurse and co-founder of ElderCare Solutions. “With support, most of our relatives age easily and gracefully, learning to adapt to the changes that are part of normal aging. The most meaningful holiday gift you give your elder may be a caring and observant visit to insure they are healthy and happy and remain so during the New Year.”

For more information on caring for your elderly relatives, call the nurses of ElderCare Solutions at (630) 416-2140.

Reaction to a Recent New York Time’s Article

Reaction to a recent article in the New York Times:

“Stepping In for a Parent With Alzheimer’s”
“Your Money” section
By TARA SIEGEL BERNARD
Published: November 5, 2010

“Stepping In for a Parent When Alzheimer’s Sets In” offers some good guidelines to protect older adults who face diminished capabilities. I take issue, however, with the “role reversal” suggestion, which implies that the parent is now a child. In fact, an adult with increased needs remains an adult who deserves that ongoing recognition, even as a decline continues. The decline in dementia is variable and can not always predicted, unlike the predictable milestones of childhood. The view of the older adult as child can lead to an overreach in interventions and create more restrictions than warranted. The challenge is to provide the right amount of assistance while maintaining respect for the history and life accomplishments, which remain within the person who, once independent, can no longer do it alone.

Signe Gleeson
President of ElderCare Solutions

Medication Can be a Blessing and a Curse

Please note: Two recent New York Times articles on this subject are noted at the end of this blog post:

Prescription medications offer the elderly an improved quality of life. But, with medications, as with so many things in life, very often less is more.

Individuals over 65 years old receive a full one-third of all prescription medications and purchase about 70% of all over-the-counter medications. Because of physiological changes, the elderly are at higher risk for adverse drug reactions. Taking numerous medications for one or more chronic conditions increases the risk even further. In fact, studies show that when taking 10 or more medications, the risk of side effects is 100%. While adverse drug reactions are estimated to occur in 2-10% of younger adults that number soars to 20-25% in the elderly.

Among the most common side effects of medications are: cognitive changes, such as confusion, memory loss and sedation; changes in blood pressure; and incontinence or other changes in bladder and bowel functioning. Taking more than three different medications increases the risk of a fall. Some of the changes that may be dismissed as part of aging are in fact the result of the adverse effects of medications.

There are inherent risks in every medication. How does one ensure the greatest benefit from medications with the fewest side effects? ElderCare Solutions suggests taking the following steps:

1. Bring a list of all medications to every physician visit, ask that it be reviewed and keep the list updated. Inform all physicians of all medications that have been prescribed. An increasing problem in medication management has resulted from multiple medications being prescribed by different specialists for concurrent problems.
2. Find out what each drug is intended to do and if there are non-medicinal ways to treat a problem, such as a change in diet or exercise.
3. Ask about possible side effects. Are there any foods, medications or activities that should be avoided when taking a medication, and conversely, can foods or activities enhance a medication’s effectiveness? How long will the medication be needed? How will you know if it is effective in treating the problem?
4. Use one pharmacy and establish a relationship with the pharmacist, often an untapped wealth of information. Make sure pharmacy records are up to date regarding allergies and drug reactions. Ask your pharmacist about prescription drug interactions with over-the-counter medications.
5. Review medications with physicians and pharmacists each time a new medication is prescribed to ensure that the new medication does not adversely interact with others. Review all medications with the physician at each visit and ask if each is still necessary or if a “drug holiday” for one is possible. Medications are frequently added, but not often eliminated.
6. Don’t stop medications without consulting your physician. Some medications need to be gradually reduced to prevent detrimental side effects.

Medical doctors are like all of us and are not immune to marketing. Certain older medications can be just as effective and much less expensive that newer medications. Ask your doctor about generic medication that may be cheaper and /or other medications that may be less costly than the “new and improved” (and more costly) brand.

Of special note is the growing use of “off label” medications. That is, medications prescribed for purposes/illnesses for which the medication was not originally intended and for which its effects and side effects have not been studied in clinical trials. If uncertain, ask the doctor if the medication prescribed has been studied in older adults and for the condition it is prescribed to treat.

Many older individuals ask few questions of their doctor for fear the doctor will think they are “questioning” his or her judgment. Let your elder know you want to be involved to ensure their well-being and your peace of mind.

Responses to medications vary from individual to individual. They are life saving and life preserving in many instances, but they do not come without risks. Family and elder involvement in medication management creates a healthy relationship with your health care provider and in turn can be an important safeguard to ensure against health-threatening drug reactions.

Two recent New York Times articles on this subject include:

September 30, 2010
Novartis Pays $422.5 Million in Settlement
By DUFF WILSON

http://prescriptions.blogs.nytimes.com/2010/09/30/novartis-pays-422-5-million-in-settlement/

October 2, 2010
Antipsychotic Drugs: Side Effects May Include Lawsuits
By DUFF WILSON

http://www.nytimes.com/2010/10/03/business/03psych.html