The squeaky wheel: Why and when do you need an advocate?

There are many good reasons for any one of us, especially the elderly, to require an advocate to help navigate, interpret and get the best possible treatment from the healthcare system. Just to prove the point, I am now receiving calls simply for health advocacy services and support with making necessary arrangements and negotiations. Even my friends call for advice!

This does not mean that our healthcare system has deteriorated. Rather, it signifies growing pains instigated by the increased volume of aging adults and their more inquiring minds, as well as their greater desire to take charge of and understand their health issues and care options. This is positive for both patients and families, and a definite change from the previous generations’ approach of “doctor knows best.”

In fact, I have clients who, after caring for their parents, have called me to get involved when it’s time for their own surgery! They want me to talk to the doctor with them, be available in the recovery room after surgery and help with discharge planning and short-term recovery plans so they’ll be back on their feet faster.

Plenty of situations are challenging and may require additional assistance and discussion with care providers and physicians on critical issues. Asking relevant questions and reviewing information to make sure your voice and the opinion of your loved one are heard can be more difficult than you think—especially when it comes to issues such as care planning, pain management, caloric consumption and end-of-life care.

When you might need an advocate

Think about when you might benefit from an advocate. Change is imminent at any time, particularly when a person’s physical or mental health is at risk or declining. Circumstances where advocacy can be useful include:

  • in preparation for and following surgery
  • for a follow-up or specialist visit
  • when testing options, diagnosis or treatment plans are going to be discussed
  • when a residential move is being considered
  • in the case of a terminal illness or where particular care is required
  • if an emergency room visit is warranted
  • during discharge planning to discuss community or homecare options
  • when treatment is not working as expected
  • when personalization of care is required to meet specific needs or wants

Physicians do not always have sufficient time to analyze or understand the medication interactions of multiple treatments for a variety of conditions. How do the pain medications impact bowel management protocols? What should happen to effectively treat pressure sores at home? In my practice, I always rely on a geriatrician or palliative care doctor to perform this function. They do it particularly well!

What to watch for

When approaching various levels of healthcare professionals, be diplomatic but effective and try to recognize which role belongs to whom. What is the personal support worker responsible for versus the registered nurse or registered practical nurse? Watch for ageism with doctors and try to pick up on healthcare worker biases and personal preferences, especially when they affect the style of care provided.

In addition, keep in mind that your elderly family member may not welcome assistance, since they may trust the doctor and the system. They may be unaware of the limitations of the system, their increasing vulnerability and additional options that may be available.

How to be a good advocate

Be professional, courteous, positive, direct, specific, brief, patient, reliable and honest. To establish a relationship of mutual trust, it is important to be respectful of everyone’s time and position and mindful of both their role and yours. Don’t be rude, go off on tangents or press for answers on first visits. These matters take time, patience and often investigation, feedback and clarification. Know that nothing stays the same and remember to always say thank you.

What to consider

Think of the logistic and financial aspects of caregiving. While these play but a small part in the process, the implication is that hiring help is costly and we can cope on our own. The boomer generation will not hesitate to cover the costs of professional advice if it is deemed worthwhile, but the previous generation may be more reluctant to ask for help or consider paying.

Legal ease

The power of attorney for care (or a nurse who has been designated to handle matters) has the best opportunity to engage the attention of physicians and get necessary answers or changes made. Hospital staff and doctors cannot spend time repeating themselves to each family member, and generally prefer to deal with a designated spokesperson with legal authority.

Changing needs

Our standards and demands are changing in relation to personal health and in the process of caring for our parents and loved ones.

Advocacy can take many forms, but the dynamics of healthcare often involve a less educated person asking questions of one who is more informed. This involves a possible struggle for power or control. Generally, best practice outcomes are achieved by a third party who does not have the same vested interest, but who can acquire information because of their additional knowledge and understanding of the condition. This can be compared to hiring a professional for legal or financial advice. Think of it this way: if there isn’t a qualified person in our immediate circle, we will hire a lawyer to represent us in court or retain an accountant to handle more complex tax-related matters. It makes sense, then, in some cases, to place the same value on healthcare and get professional assistance to help us on our way.

 10 recommendations for coping with the healthcare system

  • Ask a well-informed, trusted and reliable friend or family member, or hire a geriatric care manager or nurse to step in.
  • Get help to reduce the emotional toll on a power of attorney, son or daughter.
  • Clarify roles.
  • Figure out who can and will be available and what they can do.
  • Clarify the healthcare issues and prioritize them.
  • Discuss the financial situation and be clear on funds that are available.
  • Evaluate the costs of care and ask a nurse or geriatric care manager to help you project needs.
  • Find experienced caregivers to manage homecare as necessary.
  • Understand the mental capacity of the elderly person and how involved they wish to be.

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  1. From my experience, it is likely to be the Representative (health Power of Attorney) or designated Temporary Substitute Decision Maker who is most likely to require a professional advocate to give support in them caregiving. And it need not be for an elderly person — just anyone who has a serious illness or condition, and especially if they have entered into dementia. The ‘system’ is set up to work for the average Canadian; and I believe that most of those working in the system are doing their best for their patients/residents. However, when patient/resident doesn’t fit the average profile, they may simply ‘all through the cracks’ in multiple ways (and sometimes in an extended domino effect) — and as our lives are being continually lengthen with medical interventions, and new illnesses being discovered all the time, the average Canadian is no longer ‘average’. Well-trained advocates — who serve the system as a whole, and have no biases within it — are desperately required to ensure that all Canadian families/Representatives have support in getting the best possible care for whoever they are caregiving for.