How to Ensure Quality Care for Your Dying Family Member

 

As your family member declines, he or she will likely need care by doctors, nurses, hospice and other care professionals. Your family member may not be capable of adequately ensuring that the care given is appropriate, the care desired, or that the care is administered in a sensitive and caring manner. As the caregiver, you are in a wonderful position to be able to advocate to ensure that quality professional care is received.

How do you accomplish your role as advocate?

Remember that all the people who will be providing services are people, as well as health care service providers. They may be having trouble at home. They may be understaffed. Or, they may just be having a bad day like we all have from time to time. Take that into consideration when deciding how to approach them.

Be persistent, but not confrontational. People are people. They will be likely to respond negatively to confrontation and be defensive of their actions. However, taking the approach that your primary goal is to ensure the comfort and well being and appropriate care for your family member may get you the results you expect and deserve.

Make yourself aware of the patient's prior medical care and needs. As an advocate, it is important that you know what the medical problems are, what treatment plans have been implemented in the past, what complications have occurred, and what treatment has been successful. You will need copies of prior medical records along with the names of the physicians, hospitals, and services providing care. You will need to know when the services were provided and if the treatment was successful. You will need to know what medications have been taken in the past and for what conditions. You will also need to know what medications are currently prescribed, the pharmacy used, the dosage, any drug interactions, any food interactions, and any other implications (such as exposure to the sun while taking the medication).

To keep up with this information it would be most helpful to make a chart that compiles all the patient's medical history. This information could then easily be given to any new health care providers. Attach as many sheets as necessary to explain the condition and care. For a chart to use to compile this information, click below.

After this has been done, get a notebook to take with you to medical appointments. Staple or insert the Medical History Chart. For each new appointment, note the date, the problem, the doctor, questions you want to ask, answers to the questions, and any other pertinent information. Periodically, go back and update the Medical History Chart to include the information in the notebook.

Learn how to talk to health care professionals. Many patients (and caregivers) get "white coat syndrome". You know what questions you want to ask before you go in, but you don't seem to remember to ask them all. And, especially under stressful medical situations, it is difficult to retain all the information given by the doctor. It is then easy to misinterpret the information later or not fully understand what was said. If the questions and answers are in writing, it is much easier to see if you fully understand the treatment options. There is a wealth of information available to help you.

Choosing a Doctor
National Institute on Aging
Communicating With Your Doctor
American Medical Association
Finding a Doctor Who Will Take Your Family Member as a Patient
Full Circle of Care Caregiver Website
Getting a Second Opinion Before Surgery
Medicare
Handbook for Mortals: Talking With Your Doctor
Online Excerpts From the Book
Talking to Your Doctor
National Eye Institute
Talking to Your Doctor - A Guide for Older People
National Institute on Aging
Questions to Ask Before Surgery
Agency for Healthcare Research and Quality
Quick Tips for Talking to Your Doctor
Agency for Healthcare Research and Quality
Quick Tips When Planning for Surgery
Agency for Healthcare Research and Quality
Your Health Care Team: Your Doctor Is Only the Beginning
National Cancer Institute

 

Staffing issues are a problem for many hospitals and in-home service agencies. The hospital you use may have had to cut staff due to finances. They may hire contract staff and they may change from day to day. Having the same nurse during a stay helps ensure that mistakes aren't made and a rapport is developed between the patient and the nurse. Registered nurses may have more administrative duties and, consequently, aides may be relied on more frequently. You don't have any way to know what their training may have been. And, with the additional administrative duties, nurses may not have time to provide adequate oversight. With in-home services, the agency may have frequent turnover and the person sent to help you may not have much experience.

As an advocate, be aware of what is going on with your family member's care. Check medications. Be clear about what medicines are being prescribed, the dosage, the frequency, and what the medication is for. Dispensing incorrect drugs or incorrect dosages is far more common than we would like to believe. Be sure to identify adverse drug reactions and ask about multiple drug interactions if new drugs are administered. Does the medication interact with foods or supplements? Be particularly diligent about additional drugs prescribed after the initial treatment plan is developed. This may be the time when both families and staff are less diligent. Drug manufacturers list this type of information with each package of drugs sent to a pharmacy. Many pharmacies dispense this information with the filled prescription. If you have time, checking this information with the information from the health care worker is a good checks and balance system.

If your family member has food allergies or must have a certain diet, make sure the proper food is brought. Don't presume that in-home or hospital staff has checked the file or that the file is correct. When a person is in need of medical care, a food reaction will be very hard on them. This is especially true of diabetics.

Observe what care is provided and if it is provided appropriately, completely, and with sensitivity and respect.

Be An Active Member of Your Health Care Team - Medication Safety
US Food and Drug Administration
Full Circle of Care on Drug Safety
Helping Your Family Prevent Medical Errors
Agency for Healthcare Research and Quality
Medicines: Using Them Safely
National Institute on Aging
Twenty Tips to Prevent Medical Errors
Agency for Healthcare Research and Quality
Quick Tips When Getting Medical Tests
Agency for Healthcare Research and Quality

 

Make sure forms are filled out completely and accurately. Make sure current medications, known adverse drug reactions, food allergies, special diets, etc. are identified. More and more, this information is transferred from the documents you or the patient fill out into a computerized patient chart. Or, the information is taken verbally and a clerk makes the data entry. Make sure that the information transferred is correct. And, make sure that the same information stays in the chart, especially if staff change or the patient is moved from one hospital floor to another. It might be useful to clearly identify this type of information and tape it to the headboard or other prominent location.

Don't ever talk about the patient in front of the patient. Patients have feelings whether they are in a hospital bed or are at home. Ensure they are treated with respect. Don't talk about them as if they weren't there. They can still hear you. Evidence has shown that even people in comatose states may be able to hear what is said in their presence.

In line with this, if you have good news be sure to tell the patient. It may help in his or her recovery and may lift his or her spirits.

Woman in a Facility

 

Does Your Family Member Live in a Nursing Home and Have Alzheimer's Disease?

 

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The time you take to ensure the quality of care for your dying family member will positively impact his or her quality of life. And you, the caregiver, will know that you did your very best.

 

 

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