Featuring articles and discussion of diverse topics and issues, including:
Disabilities, Home Health Care, Sexual Abuse of Children, and Advocacy.

Home Health Care and Medical Care Issues

        Healthcare has gone through major changes over the past 20 years, in part due to insurance (coverage) issues.  All of these changes affect the consumer (patient and family).  Some States are better at the delivery of and payment for services than other States.  But, as a consumer, you need to be aware of issues that might affect you.  One of the problems, though, is that since healthcare is supposed to be and always should be personalized to a specific patient, the "problems" each patient experiences may often be different.  This makes it harder to make generalized statements about healthcare, its delivery, or about what to do in the event YOU are faced with problems in receiving healthcare.   

        All patients at one time or another will have some type of problem, regardless of whether you are hospitalized, are receiving care at home, or are living in a nursing home.  Problems are inevitable when the needs of one are being met by the care of many.  I'd like to narrow the discussion here, though, to home health care services.

        By its very nature, home heath is so much more intimate than any other form of care since services is given in the patient's home.  Unfortunately, high turnover of home health aides and nurses and other serious issues can make a patient feel like an object rather than a person!   The following are just some of the things that can  contribute to making a patient feel like an object:

if a company constantly changes the schedule or staff providing care;

if a company does not communicate well about who is coming to take care of you;

if Aides abruptly quit working for you or quit the whole company;

poor communication from the office or from workers;

having multiple persons discuss your case (and having to tell many different people your life story);

having people talk about you, rather than include you in making decisions;

feeling like there is a revolving door on your home (too many people in & out);

having your concerns or complaints minimized or ignored;

irregular service from an agency, causing you to have to call relatives or friends to help during those shifts (and when relatives/friends "pass the buck" about who will come help you).

        Few companies seem to understand (or care?) about the whole patient, and this is evident when "objectification" happens.   Instead of realizing this as a care-delivery issue, patients are at risk of being labeled "difficult," "critical" (e.g. complaining or an unhappy person), or a "problem patient."  Instead of being seen as the "problem" though, Home Care companies should realize that anyone who feels treated as though they are an object will eventually express frustration, anger, outrage, and if not handled correctly and immediately, objectification can lead to a patient feeling depressed, helpless and very powerless.  These emotions only add to the existing frustrations and other negative emotions that come with being ill or disabled, especially in long-term medical situations.

        Instead of labeling a patient as "difficult" or chronically/always "unhappy," or a "complainer" Home Care Agencies should take steps from the beginning to minimize these issues!  And, corrective steps should be taken as soon as possible when "objectification" is noticed.

Ways Home Care Agencies Can Minimize Creating a Negative Impact on a Patient

        One of the most obvious ways a company can help is to teach, teach, and teach (some more) all direct-care personnel.  In-services need developed which introduce and explain the types of issues patients experience simply by having a chronic illness or disability.  Patients are often frustrated by illness that has interrupted their lives, especially if the person was extremely active before the injury/illness, or is a highly motivated person.  These patients might have a harder time when their circumstances now require them to ask another person to meet every need they have, and in having to direct another person constantly about how to supply the need, and then wait for the other person to give them what they need.   Having to ask for every little thing one needs adds up and has a cumulative negative effect.

        I often use an example to describe this kind of frustration.  Imagine yourself as active, independent, and capable of doing most things you want to do and meeting your own needs for the 'basics' everyday (basics are:  getting yourself water, food, toothpaste/toothbrush, washing your own hair and face/body, turning on/off a source of entertainment like TV, radio, music, etc.).  Now, imagine that your butt has been glued to a chair or bed, and you must now ASK for each thing you want or need.  Want to read a book, but no one is there to help you get the book?  Tough, you must wait.  Are you hungry or thirsty?  Tough, you must ASK someone to get you food and a drink; if no one is there, you must wait.  No cheating!  You HAVE to ignore your want/need until another person arrives to get it for you.  

         If newly hired Aides had in-services that give descriptive examples of what it is really like to be ill / disabled, maybe they would understand the kinds of issues a patient faces every single day.  New hires also need to be impressed with certain facts: 

    Number 1 is: Your patient RELIES ON YOU!  

        That is so important, let me repeat it again:

Your patient RELIES ON YOU!

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        Number 2 is: Being a home care worker is more than a job, it is a 

RESPONSIBILITY, a COMMITMENT!

       That merits being repeated, too.  

Being an Home Care Aide is a RESPONSIBILITY, a COMMITMENT!!

*

        An Aide needs to be almost as committed as one would be to your own family, your spouse, your children, or your pet.   Companies should enforce call-off policies and when an Aide does not follow the policy or exceeds what is spelled out in the policy                      .  Companies need to raise their expectations, which will in turn raise the ETHICS of home care workers. 

*

Number 3: Aides need to develop WORK ETHICS.  

        Patients are all individuals, with individual needs, but most share common issues (to one degree or another) concerning independence, self-autonomy, privacy, powerlessness, helplessness, and frustration with themselves or their circumstances and limitations.  Aides need to know these issues may exist, and help to minimize how their actions affect a patient negatively.  Last-minute call-offs, no-shows, being demeaning, sarcastic or judgmental, or not committed to a work ethic all can increase a patient's frustration level.  Also, Aides need to understand that a patient's frustration may not be about the worker, but about the circumstances; Aides who are trying to be responsible and committed to their work should not view a frustrated patient as being "difficult and demanding."

Patient frustration is not always about you, but if you

show a lack of work ethic, you will increase the frustration.

*

Number 4: RESPECT.

        When working in someone's home, RESPECT must be broad and complete.  Common courtesy is expected.  Knock on the bedroom door before entering each time, and give some warning of your presence: "I'm back with your ice water" or "Here I come with the book you wanted."  Privacy should also be given with toileting: As long as the patient is safe sitting on their own (don't need held by you), turn away, walk outside the bathroom door (within earshot), and maintain personal boundaries when possible.  Most people (non-ill, everyday persons) are uncomfortable when someone gets within the three feet designated as "personal space."  Unless you need to do hands-on care, move back and respect their personal space.  

    Give respect to each patient and use common courtesy.

    Everything within a patient's home is theirs and negative feelings can be created when others do not show respect and care of the patient's belongings.   You would become upset if someone entered your home and started making comments or making decisions about your belongings: maybe their furniture is all they can afford.   And, ASK where the patient stores items, from clothing to drinking glasses, and then return items to their proper place.  Don't "rearrange" a person's home, drawers, or cupboards for your own taste or convenience.  Persons with disability or vision problems depend on knowing where things are kept, and this can help a patient's independence because they can, when able, go get a needed item themselves.  (But not if everything has been moved!)

        These examples are just some of the basic training a Home Health Care worker should know BEFORE seeing their first patient.  Companies can do a lot with training workers, which will reduce the stress and frustration patients experience.   Read on....

This link goes to a first-person story about what it is like to live in a nursing home.  There are a lot of similarities to home care.  I am working on what a "day in the life" is like for a person still at home who must rely on home care workers.

A Patient's Perspective (nursing home) by Rachel Giarrizzo

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