Recently, I experienced being a caregiver to a postsurgical family member. It was not a role I wanted or relished, but the experience taught me more than any other mode of education could. Almost simultaneously, I received a letter from a true caregiver. Jo Ann was the primary caregiver and medical power of attorney for her 91-year-old father with dementia during a 5-year span. She wanted to share her family's perspective of their medical experiences so that case managers might gain insight and feedback. I want to add my voice-starting with the fact that caring for an ill family member may be the hardest work I have ever done. It is not for the faint hearted, and I have no idea how those with suboptimal health, themselves, can cope. So my first critical request for case managers is to keep in mind that families coping with long, chronic illnesses need support and, when possible, respite.

Not everyone can cope, cope for the entire episode of the care, or cope optimally. Jo Ann writes the following (note: Jo Ann's insights are in italics):

Please be aware of family dynamics and individual coping mechanisms. In my family, the adult children are still "kids" in their parents' eyes and should stay in that role. Family members can push for appropriate actions but are hesitant to force their loved one. When my Dad broke his hip, he absolutely refused to go to the emergency room, saying that the pain will go away. So I waited a little while until he changed his mind.

During the Hospitalization

The family is very distressed when a loved one is hospitalized. Even though we knew Dad would not live forever, it is traumatizing to see his mortality (and ours). The reality of his possible death slaps you in the face. The torch of his generation is being passed on to the "kids." I cannot overemphasize the amount of family stress. It was heartbreaking to see Dad lying in a hospital gown, in a hospital bed, and in pain when he moved or walked. When a loved one hurts, you hurt. There were machines beeping and teams of unfamiliar doctors using a lot of medical terminology. I spent hours doing Internet searches!!

But even hours of Internet searches often yield information that is too late (i.e., not understood until after the medical conversation), only partially understood, or may be from a questionable Web site. I did not have to do hours of Internet searches. I knew the lines, the machines, the meaning of the numbers, and what "ileus" and other complications meant; I knew what caused the complications and the likely trajectory and approaches that would be attempted if the first treatments did not work. So, please use common words when possible. If not, give explanations that the patient/family can understand. The physician explained to the patient that an "ileus" was likely caused from two long surgeries over two consecutive days (anesthesia, pain medications, and so forth), and that it was as though the bowel was "sleeping"-a pretty clear explanation.

Discharge Planning

I was very happy that the social worker came in and asked some very pertinent questions that would guide the determination of discharge needs. As we know, more often than not, families do not know what they don't know!! Therefore, they don't know what to ask. It is a case manager's job to assist them to articulate questions. I cringe when I look in a medical record and little discharge planning efforts are documented except "answered all questions." That leaves too many potential gaps.

I was not pleased because the social worker came in after the discharge order was written; since the hospitalization was 7 days, there were ample opportunities for an earlier introduction. The day before discharge, I figured out that a major piece of equipment was needed at home-and was fortunate enough to get it delivered in the nick of time. Over the years, it has become a mantra: Discharge planning begins upon admission. If not for my training, there were numerous possibilities for an unsafe discharge.

Jo Ann's experience was even more troubling. Unfortunately, I have often heard these stories of intimidation and demoralization-so often that there must be some truth to them. And they are not attributed only to hospitalists.

The discharge planning process got off to a horrendous start when the hospitalist told us that the hospital was "losing money on this patient" and that it was time for discharge. You can imagine the reaction from us!! So case managers may not realize what kind of minefield they are walking into when dealing with the patient's family. Maybe improving the doctors' bedside manners might make your job easier. As a side note, I really think medical ethics has yet to be sorted out. It seems the lines are blurring between "conservative" treatments and rationing care for a very elderly person who probably has little time left on this earth. Whose decision is it to make? How far to go?

Some Other Discharge Planning "Jo Ann Insights" Include

The hospital case manager gave excellent advice regarding the goals of rehabilitation centers. However, choosing a rehab center takes a lot of time. Not all family members live in the same city or some work more than 40 hours a week, which slows down the decision process. Given a list of places, the Web sitehttp://Medicare.govdoes not have ratings on all of them and some ratings are not very current. It took us 4 hours to tour each facility, to ask questions, observe the staff, etc. Each rehab center has a book of surveys from former patients that describes their feedback. Please know that these surveys are not all inclusive or mandatory!! The facility can pick and choose who participates in the surveys. Had I known this ahead of time, I would not have wasted my time even looking at their summaries.

At one point we toured a rehab center close to our home but were not impressed. We were very noncommittal and did not stay long. However, this facility actually phoned the hospital case manager to begin the admission process!! This caused confusion because we had already stated our preferences which did not include them. We were angered by this action and question their ethics. So please be aware of the complications that outside forces can create which wear down the patience of families and case managers.

Please always ask if the client is a veteran; vets can be male or female and of all ages. There are some great assistance programs available from the Veteran's Administration such as free personal care assistance for up to 8 hours per week, even for Group 8 vets (those whose income and assets are above the previous VA thresholds). The vet needs an ID card and a prescription from a VA doctor. This could have saved us hundreds of dollars in private pay caregivers.

Medication Issues

Dad's hip surgery exacerbated his confusion; he became restless and began pulling at tubes and could not remember anything. Complications set in and his involuntary muscle movements were frightening to watch; it was frustrating that the doctors paid little attention to it. Later we discovered the cause to be a drug side effect. So please be aware of individual tolerances to drugs. My family experienced a lot of stress over Dad's fragility, pain, and dependence. It was a disaster in slow motion.

Confusion due to drug interactions does not happen only to 91-year-olds. When this occurred on the third night, I was frightened. Being "medical" did not buffer my feelings. And pain management issues do not happen only to those who cannot express themselves clearly.

While in the rehab process, my Dad would frequently yell out "aarrgghh" and everyone attributed it to his dementia. When he returned home, his yelling intensified both in volume and frequency. Neither distraction nor discussion about it helped. His yelling was so distressing that visitors would only stay about 15 minutes. My mantra became "help me, Lord." The turning point was a readmission to the hospital due to breathing problems. It was determined that he had advanced pancreatic cancer, and the pain was causing his breathing problems. And the painkillers stopped the yelling!! We figured Dad spent about 4 weeks in pain, but because of his dementia he could not tell us about it. And he certainly did not grimace with pain. I wonder how many others could be wracked with pain and unable to express it. Maybe a short trial of painkillers could rule it out. So much grief could have been avoided; it bothers me even today to think about this.

My experience echoes this. Of all the trials during the weeklong hospitalization, the vision I can't shake happened the night when intravenous Dilaudid was changed to a mild oral pain medication-one often used after tooth extraction. When the Dilaudid wore off and the totality of the pain was apparent, the patient was sure he was dying. This was not an exaggeration; rather, he felt he "broke" everything the surgeons spent 2 days putting together, and there was no way to reconstruct it. It was not until a more appropriate pain medication took hold that I could explain the concept of "perception of pain"-that, rather than a change in his physical condition, this was likely the first time he felt the full extent of the surgical trauma. Perhaps a conversation prior to the pain medication change-along with a more appropriate medication choice-would have changed this horrifying night.

Although it sounds contradictory, I am so grateful for this experience. We hear so much today about what's wrong with healthcare; but I have to say that my feelings about healthcare staff have been recalibrated. I was blessed with so many compassionate and intelligent nurses, excellent physicians, competent physical therapists, and responsive aides. So take Jo Ann's final insights to heart:

Case managers play a much needed role in navigating through the healthcare system that is so foreign to most people. The way I see it, you are trying to make the best out of a bad situation. And that's not an easy thing to do!! Please know that you are appreciated.

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