Proactive Involvement with Your Loved One’s Care

Proactive Involvement with Your Loved One’s Care
Written by Barbara Mascio

It is obvious, when you think about it, that when a spouse, parent, or other loved one is in need of outside services that he or she has become less independent. This lessening of independence also affects, on many levels, the lives of each the other spouse, the adult children, and the friends and family members of this person.

So, the person in need of help or services is vulnerable. This vulnerability is measured in degrees proportionate to the lessening of independence. It is then the caring friends and family of this person who, sometimes by design, sometimes by default, become the advocate. Speaking up for the rights of this person, ensuring that this person receives the best possible services or care.

This position of advocacy, for many people, is new territory. An unknown world. Learning how to navigate within this word, typically the health and elder care arena can be accomplished with a few helpful hints to get you started in the right direction.

Write it down, write it down, write it down

Purchase either a notebook or a calendar large enough to write notes in it. Keep a running journal – short and to the point. What to write down:

• The first and last name of each individual person that is interacting with your loved one. The doctor, the nurse, the in home care companion, the nurses aid at the assisted living facility or nursing home, the name of the activity director, the administrator, the cleaning person you pass in the hall, - any one that you meet that has anything to do with the care or is within the near proximity of your loved ones.

• Learn what the chain of command is. Ask the question, “Should I have a concern regarding my father’s therapy, who are the staff members that I should first speak with?” Followed by: “And if, by chance, this person can’t satisfy my concern, who is the next person in the chain of command that might be able to help me?” Write this down.

  Now, it may well be that the chain of command has several legs to it. A question regarding therapy has one set of people, a question regarding diet another, and one dealing with activities another. Find out who these people are – before there is a problem.

• Acquire the names in a polite manner. Introduce yourself, introduce your loved one. Elevate the thinking from – patient number 123 or bed number 106G – to ‘This is my father, his name is ---. My name is ---, I am his daughter. ‘What is your name?’

• Learn these peoples names and recognize them, ‘Good morning Leslie!’ Try to find something legitimate to say something nice or complimentary about the person.

You are setting the stage of familiarity. You want ‘strangers’ caring for your loved one, to no longer be a stranger. You want them to know that you appreciate their vocation. You appreciate them as a person. They in turn (should) reciprocate by having a higher intent behind all that they do with your loved one.

Even if it’s a person who doesn’t respond to kindness, he or she will at the very least recognize – THAT YOU ARE PAYING ATTENTION – to everything and everyone involved in your loved one’s care.

• Each time you’ve called or stopped in and asked a question, presented a concern, etc., briefly jot down the details of your conversation. Write the date and the time and most importantly, the name of the person you spoke with. Why?

  You may not get that return call as quickly as you’d hoped. You will then call again to follow up. (write this follow up call or visit down the same way as you did the first time) This way, you can begin with, “Administrator Joe, this is ---, I’m calling you again because I haven’t heard back from you. I called on --- date at --- time and spoke with --- and I was assured you’d get back to me. It is now ---date ---- time, and I would like you to get back to me regarding --- state the issue.

• Each time a resolution has been promised to you – write it down. Include the date, time, and person’s name. Jot down what they said to you. If, as time unfolds, that this promise has not been kept, you have documented proof of your efforts – their promise – and now you attempt another resolution.

• Write down other key items as well. Doctor appointments, result of the visit, changes in medication and why and so forth. Just get in to the habit of writing everything down that directly affects your loved one’s quality of life and care. Write it within the same notebook or calendar so that you can quickly and easily refer back to it.

Getting Help - Advocacy for Your Loved One

What can you do if you find that you are not getting issues resolved? Or that new problems continue to arise? You have the right to ask for the assistance of what is called the Ombudsman.

An Ombudsman is an advocate for residents of nursing homes, board and care homes, and assisted living. Ombudsmen provide information about how to find a facility and what to do to get quality care. They are trained to resolve problems.

If you want, the ombudsman can assist you with complaints. However, unless you give the ombudsman permission to share your concerns, these matters are kept confidential.

Under the federal Older Americans Act, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the long term care system. To find the ombudsman nearest you, contact your State Ombudsman office.

Patient's Rights

If your loved one is hospitalized or admitted in to a nursing home, or has elected to move in to an assisted living facility, or is receiving in home care services (either medical or non-medical care), or has enrolled in to an adult day service – ask to see this organizations Patient’s Rights. Each will have one. Each will be similar in nature, as each must adhere to the basics required, yet each may have additional wording.

Know what the rights are. Ask questions to clarify any point that you may find unclear. Further, ask what are the remedies. Meaning, if the organization fails to keep its end of the declaration, what is the proper recourse for you to follow up with a concern or complaint.

What are the basic rights?

A. All medical care is your choice. Every competent adult patient has the legal right to decide whether to accept or reject any medical care-even emergency or live-saving care.

B. Information Access. Doctors have a legal obligation to give you whatever information you need to make your decisions about medical care.

C. Patients have no legal duty to sign consent forms. When presented with a consent form, do not feel pressured to sign right away. You are free to sign a form, but make sure it accurately describes what you already been told, and keep a copy for yourself.

D. Patients are entitled to privacy. Patients have the legal right to refuse to have anyone but their doctor participate in treatment. Patients are not required to allow interns, residents, researchers, medical students, or anyone else to be present when they are examined or treated.

E. Patients have the right to obtain a copy of their medical records. You may have to pay a ‘reasonable’ fee to offset a copy price.

F. Patients have the right not to be discriminated against on the basis of race, color, national origin, gender, sexual orientation, or disability

Keep a copy of the Patient’s Rights in the notebook that you are now committed to writing everything in.

Care Plan Meetings

Care Plan Meetings: Long-term care facilities always have some form of formal care plan meetings. Home care and adult day services will also reevaluate the care plan of the patient but may not do it in the same fashion.

What is a care plan meeting? It is, in simple language, a meeting of the key staff members (and/or the supervisors of these staff members) directly involved in the care of your loved one. A typical schedule is set in place and is normally done within the first 4 weeks of admission and then once every three months.

If you have been listed as a contact person for your loved one, you should be invited to these meetings. You – and your loved one – in fact, have every right to attend these meetings. It is valuable for you to be there. You will hear a report from each key area in which care or service is being provided and how your loved one is responding to this care. You have opportunities then to ask questions, suggest other input, and in other words, become proactively involved in the decision-making process.

You also have the right to request a care plan meeting if you feel that waiting for the next quarterly scheduled time is too far away for you to have certain issues described.

Please note. Most facilities will readily accommodate your request. However, you don’t want to overstep this privilege and demand weekly ones or demand a meeting today, when it would be virtually impossible for the staff to get everyone in at your beckon call. Be reasonable about this.

Starting Out Right

However, how does one ascertain between the choices available? Asking friends that have possibly used a service can be helpful. But not always. Each person receiving a service has his or her own unique needs, desires, and ultimate goals. What your friend (and his or her loved one) may consider a horrible service, may in fact, be the right one for you. It just might be that this particular service was not the right match for their needs and would in fact, be perfect for yours.

Asking for references may sound like a logical thing to do. But we both know that no one is going to give you a ‘bad’ reference.

Senior Approved Services, LLC is the only company nationwide that will provide you with an independent unbiased report – but can only do so for businesses that have agreed to allow us to survey their clients. SAS does not earn a commission from the business when referring clients to them. SAS serves the family and the senior and we do so by connecting you to health and elder care resources that we can attest to based on these surveys.

If you are considering a long-term care facility, the ombudsman office may also be able to help you by making recommendations towards facilities that they find to be in compliance.

The Citizen’s Coalition for Nursing Home Reform also publishes what they call a Nursing Home Watch List.

Another method to review the reliability and safety records, and to some degree, overall quality of care is through the process of state surveys. However, unless a business is subject to a state survey, then this of course would not apply.

State Surveys: Any time you are contracting with an outside source to provide services and this business accepts Medicare or Medicaid as sources of payment (even if you and your loved ones are not paying with either of these methods) know that this business is subject to a state survey.

A very simple explanation of this kind of survey is: In order for this business to qualify as a vendor that accepts government-funded dollars, it must meet and maintain certain standards. A survey is conducted at regular intervals and is done by a government employee that has been trained to look at all aspects of the business and will then provide a final report. Almost like a report card.

The survey may reveal a problem, or a set of problems – meaning – the surveyor found that this business failed to meet the basic requirements imposed upon them. The business now has a certain number of days to correct the problem and then request that the original findings be amended based on the fact that the problem has now been ‘fixed’.

The survey results, which will include the level of severity of the violation, and will also eventually include the business’s response to the violation, is then public record.

You, as the consumer, have the right to ask to see this facility’s (home care service, adult day) latest survey results. They must keep a copy of it, and they must show it to you.

Alternatively, you can also read the survey by going to Medicare.Gov Scroll down the front page of this site to the heading ‘Search Tools’ which is almost to the end of the page. Under this category you will see, ‘Compare Home Health Agencies’, ‘Compare Nursing Homes’ etc.

The most important fact, I think, to consider: Once your loved one has begun receiving care from an outside source (in home care, adult day care, nursing home, etc.) stay involved. Don’t announce your visit, just stop in. Be observant. Listen to what your loved one is saying. Pay attention to sudden sadness, isolation, bruising, lack of activity, and loss of weight.

Do not ever feel as though you can’t ask a question – and – expect an answer that you can understand and accept.

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