While it might not always seem that way, Caregivers actually have the power to advocate within our healthcare system for their loved ones. You need to learn when, where and how to wield it.
On one hand, caregivers coming into contact with health care systems, hospitals, or care facilities often find compassionate staff who provide high-quality care, who bring them peace of mind and confidence. On the other hand, the system can also be confusing and frustrating. You can just as easily find that you are not properly informed of events, conditions or progress involving your relative. You may find that decisions about care (regarding medication, admission into or discharge from care homes or hospitals, etc.) may be made without your input. You may be left wondering if services and care have been inadequate or even inappropriate.
The reality of our times is that resources are very limited. Health systems triage–medical personnel are forced to make decisions about who will and who will not receive certain services or treatments, for how long or how much they will receive, or when they may receive them. Many services which could have made a significant difference in the direction someone´s life may take have been cut or drastically reduced. In the face of this rationing of resources, family advocacy can make a significant difference in the treatment of a loved one.
The role of advocate may be challenging for some caregivers. Healthcare systems, facilities and practitioners can be intimidating and difficult to access. Without knowing “the system” you may not know to whom you should speak. If you do not have a medical background you may not know what questions to ask or how to ask them, and answers may seen vague or not be given at all. You may not be sure about what you have the “right” to expect. If your family member is in a care home, you may even be afraid that if you say something, there will be retaliation directed towards him or her.
The role of advocate starts with education for the advocate. Go onto the Internet, talk to people who have been through what you are going through, or call an organization such as the Parkinson´s Foundation or the Alzheimers Society in order to become more familiar with the condition that brought your loved into hospital or care. For example, if they were admitted to hospital for a broken hip, learn about hip fractures, how they are repaired and how rehabilitation happens. Also, look into proposed or current treatments or processes. Armed with this information, you will have more confidence in asking questions of health practitioners. If something they say confuses you, ask for clarification until you get an answer you understand.
Always ask about the medications being used. Do your own research on them, especially for medications being used to control or modify behaviour. (These are restraints and sometimes they are necessary but sometimes are not!)
Have a care conference as close as possible to time of admission or occurrence of an event. A care conference is a meeting of family, patient/resident, and involved personnel, the goal of which is exchange information and do care planning. This is a good time to inquire about alternative treatments, and make suggestions for changes to care.
Be clear in your own mind about what your expectations are. Consider what you think should or shouldn’t happen, then make your expectations known to the staff. They may agree or may not. Then you will have to decide if you will acquiesce, or talk to someone with more authority.
Remember that family members have an expertise that staff do not have: you know your relative. You know your mother’s personality, her values, her expressed wishes. You know her abilities, how she has been caring for herself, and what her memory has been like. These are also important in forming the basis for you to develop your expectations. They also should help staff determine goals of treatment and care.
If you are told that something is not possible for some reason–lack of ability, no appropriate resources, “rules” which prevent it–find out as much as you can about what you are requesting. Look for other ways to approach what it is you would like. Develop solid, fact based reasons to make your case for what you want. Understand that there are times when recovery is not possible, for instance, but don’t give up until you are convinced.
Sometimes there is someone available to help you in your advocacy role. For example, hospitals often have a Unit Director or Coordinator, a Patient Care Advocate, or a similar role. There is always a head of nursing and heads of other disciplines such as Physiotherapy or Rehabilitation. Health Authorities have licensing personnel, case managers and administrators. Most provinces have an Ombudsperson (in BC: www.ombudsman.bc.ca) or someone in a similar role.
If you need to become an advocate, believe in yourself, your strength, and your ability to find answers and get what you need.Pay attention to your “gut” feeling if something does not seem right. Go back to the places and people you spoke to when you began your research and use them as support or information.
At the same time, be honest with yourself. Grief and guilt can often be expressed as anger and advocacy can stem from denial of what is true. Remember that advocacy is on behalf of someone else who needs your help; not for the release of your own pain. At the same time, there can be tremendous relief from pain when you take action to help.
If you would like help or support with advocacy, you can also contact Diamond Geriatrics. Part of our mandate is to serve as your healthcare expert and advocate. Our team consists of experienced professionals from the fields of Social Work, Nursing, Physiotherapy and Occupational Therapy. We understand how systems work and can help you ask the questions you need to ask. We can be there with you, on your side.
About Health Care Staff in Hospitals and Care Homes
We were on CBC Radio the other week when aa listener phoned in to say that one of the problems with care staff in nursing homes is that they are not interested in providing better care. This is not an uncommon perception. Similarly, people may experience staff in hospital as uncaring.
Staff in large systems and complicated organizations are often caught by the systems. They are restrained by limited budgets and inadequate staff levels. For example, there may be one Occupational Therapist for twenty to forty patients. There may be one care aide who is supposed to help four people eat , yet one of those may need individual help and take an hour to feed in order to have adequate nutrition. These limitations make it extremely difficult to provide the care and treatment that many staff would like to give and which they know could make a difference.
Staff base their judgments on their training, what they have seen before in similar situations, how they perceive a patient or resident, and sometimes on faulty information gathered about functioning before admission. Family input and advocacy are so important. to make sure the information and perceptions are correct. We’ve all run into medical staff who are arrogant, rude, and uncaring. But in our experience, whether they are a nurse, housekeeper or lab technician, the majority are compassionate, caring, and dedicated people who continue to practice their profession in difficult situations because they truly want to help.
Warning! Don’t Let Information Get Lost!
When a client of ours was discharged to a care facility it took the care facility three days to find out the woman was a brittle diabetic. Why? Because the information was not included in the transfer information sent by the hospital, and she had a new doctor on admission. Other clients have been discharged with papers saying they had conditions which they did not have.
It is easy for information to get lost or incorrectly transcribed from a record onto a discharge summary which accompanies a person after discharge. Make sure that wherever your relative is going the correct information goes with them. Make sure the doctor, pharmacy, or care facility has the right diagnoses and the correct medications and when they are to be taken. Verify what you know from your relative’s past, with what is down on paper or sent electronically. If there are medications with which you are unfamiliar, find out what they are and why they were prescribed.
Also make sure that you or your relative knows the costs of the medications that are prescribed on discharge. In hospital, they will likely be covered by healthcare or insurance. However once the patient is in the community or in a care facility, the cost of those medications may no longer be covered – and they could be very expensive. If you must pay for them, check to see if an appropriate cheaper generic version is available.
