Recently, I experienced a situation that prompted me to send the following survey to colleagues and friends “Based on your experiences, as patient, friend, family member, and/or provider, what are the top five things you would list that someone could do to ensure that the inpatient receives the care he or she needs.”
The responses were identical - the number one response was-BE AN ADVOCATE.
From my experience as an inpatient as well as the daughter of one, there must be someone at the bedside to advocate for the patient. If it can't be 24/7, then perhaps shifts can be taken by people who care. I don't know of any other way, given the situation at most hospitals or perhaps all of them. ..I've literally saved the person's life, because no one was around to notice there was an abrupt change…”
Too weak to advocate for myself, the whole process of "saving" me happened only because of the chance timing of a visit from a neighbor(s) -one a retired nurse the other a retired social worker.
My friend and colleague Grace outlined five ways to be an advocate:
1) Be an advocate for the person who is ill. Speak with (polite) authority to his/her medical providers and make it clear what you know the patient needs and what you reasonably expect them to offer.
2) Question procedures and prescriptions, making sure that what the provider is doing is not going to have a detrimental impact on the patient.
3) Explain the patient’s home situation to the doctor so (s)he will prescribe outpatient care and prescription medicines that are realistically affordable for the patient and can actually be realized; it does no good to recommend physical therapy or “third tier” medications if the person can’t afford them or has no access to get treatment.
4) Act as or organize an information conduit so the patient doesn’t have to answer dozens of phone calls from friends asking the same questions over and over again about the state of her/his health. Make sure other family and friends are informed as much as the patient wants them to be and request that calls be limited to encouragement and support instead of asking for daily healthcare updates from the patient. Also, be willing to return calls on behalf of the patient so (s)he isn’t overwhelmed with inquiries when (s)he doesn’t feel up to talking.
5) Offer to take care of some of the daily responsibilities the patient may have at home or organize a group of volunteers to help out: feed the pets, mow the lawn, shovel the snow, take in the mail, do the laundry, clean the house, do whatever makes sense to alleviate the patient’s worrying about what (s)he will find upon coming home.
One respondent noted, Sometimes I've found that people, including close friends and loved ones, can't deal with illness and such. These people feel helpless and family/friend don't even realize that all they need to do is hold the hand of their loved one, who feels so alone, vulnerable and frightened to death.
Several respondents noted the need for possible volunteer programs to help with advocacy. Personally I think this is a huge need - not only in hospital but in outpatient. I have pondered if there might be some way for a group of savvy women to start and advocacy team.
In doing an on-line search, I found that the University of Minnesota’s Taking Charge of your Health has information for the patient and family and friends on ways to help during a hospitalization. Similar to my survey findings, their number one recommendation is to “Have someone with you at all times.”
A tight economy, budget cuts, an aging population and sicker inpatients are causing considerable stress on an already stressed system. As noted in Have Healthy Hospitalizations from the University of Minnesota’s Taking Charge of Your Health While it may seem ironic, hospitals are not necessarily healthy environments. According to a 1999 Institute of Medicine study, as many as 98,000 people die each year due to medical errors.
Therefore to help your family for friend obtain the best possible care, be an advocate, use Grace’s tips above and/or those offered by the University of Minnesota’s Health Hospitalizations.
If you are not able to be with a friend or family member, the patient and/or their designee, should check with the hospital to see if they have a program where a volunteer can sit with them.
I know that several people have said they’ve tried to join the blog but weren’t able to do so. Please don’t hesitate to e-mail margoc@tds.net me directly with your comments and suggestions.
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