On January 4, 2012, my mother was unexpectedly admitted to an acute care hospital in Cleveland, Ohio, where she lives. She remained hospitalized for 40 days ( very long by today's standards ), and during that period of time, on day 27, she suffered a stroke. I travelled from my home in Florida to Cleveland on four different occasionss, spent two full weeks at her bedside morning to evening, and two overnights, including in ICU, the night she suffered a stroke.
Observation #1 Sleep Deprivation: There seems to be a constant intrusion of people into a patient's room day and night. Most hospitalized patients are likely sleep deprived by discharge, contributing to cognitive changes, depression, and reduced tolerance to medications and procedures.
Tip: Ask for a sleep mask and ear plugs if you do not have your own. Post a sign on the door of the room and ask that only essential people enter the room. This may also reduce hospital acquired infections travelling on clothing and hands of various people entering the room.
Observation #2 Hygiene: On my second week long visit to the hospital, I offered to help my mother bathe and wash her hair. This was week three of her stay, and when I asked, she indicated that no one had offered her a basin of water for bathing prior to this time. Fortunately she was able to brush her own teeth ( oral care being exceedingly important). I was stunned that bed baths are no longer a part of basic nursing care, and wondered about the patients who had no family at their bedside to help with basic hygiene.
Tip: Ask a spouse, adult child or close friend to help you bathe. Request to brush your teeth daily. In particular, if you have a swallowing problem, oral care is one of the greatest safeguards against oral bacteria getting into the airway and lungs.
Observation #3 Pulmonary Hygiene: The night before my mother was to undergo a major surgery, I saw an incentive spirometer on her bedside table. This is a breathing device, designed to help patients take a deep breath post surgery as a prevention of airway collapse and pneumonia. No one came to instruct my mother in its use until the day of surgery. Approximately 6 hours post-op, with my mother still sleepy from anesthesia, a respiratory therapist arrived to instruct my mother in the use of a spirometer. Following five minutes of training, she left with further instruction that my mother utilize this device every hour for the next 10 hours. Had I not been present, it is doubtful that my mother would have even remembered the visit much less the instruction. For every day thereafter, not one health care provider offered to help my mother use this device, despite pneumonia being one of the greatest post surgical complications.
Tip: If you are being admitted to the hospital for a scheduled surgery, ask to meet with a respiratory therapist before your surgery. Ask to be instructed in the use of an incentive spirometer. Better yet, if you have Parkinson's, MS, or any other neurogenic disease, consider use of a respiratory muscle trainer for several weeks before your scheduled surgery. Improving inspiratory-expiratory respiratory effort and cough may help safe guard against the development of pneumonia.
Observation #4 Physician-Patient Communication: Physicians frequently do not read the medical record notes of other physicians or allied health care staff. Several days after my mother's stroke, a cardiologist who had seen her some time previously came to her bedside. He began to converse with my mother and ask her questions, apparently unaware that she had suffered a stroke and now had aphasia and was unable to respond ( aphasia is difficulty understanding language or speaking). My brother, present at the bedside, informed the physician of my mother's current condition.
Tip: Of course, you cannot control physician's behavior, but you can request that any health care provider review the medical record prior to examining you or delivering care. If a patient has a severe hearing loss or difficulty with verbal communication, request to post information notifying staff in a visible place in the patient's room. While nursing staff may not be able to post these types of notices due to privacy rules, family members may request to place this type of information in the patient's room.
Observation #5 Meeting A Patient's Communication Needs : Following my mother's stroke, she was unable to speak, despite apparent understanding of language. She was never offered an alternate means of communicating such as a picture/symbol communication board. Patients with communication impairments are the most vulnerable of hospitalized patients. They may be unable to use a call button to summon help, report pain or other symptoms.
Tip: If your family member has suffered a stroke with a resultant speech and/or language impairment, request a consultation with a speech-language pathologist. With the help of the therapist, identify the best mechanism for communication with nursing and medical staff.
Observation #6 Discharge Planning: Family members are often unprepared for discharge. Discharge from the hospital, although a desireable event, can often seem to come quickly and unexpectedly for family members who may be charged with the task of selecting a rehabilitation or nursing facility.
Tip: All units in the hospital have an assigned case manager and/or discharge planner. Ask to meet with this person early in the hospital stay. The case manager, usually a nurse, is often charged with managing hospital length of stay, and expiditing safe discharge. They are usually in communication with the insurance providers, aware of limits in funding and knowledgeable about community resources. We were fortunate to have the help of a compassionate and knowledgeable case manager.
Observation #7 Advance Directives: We were fortunate, as a family to know my mother's prior wishes regarding extra ordinary measures. She had a health care power of attorney in place, and I was her health care surrogate. Yet, despite the many times I would engage my mother in discussions about "what if", it did not lessen the gravity of enforcing her wishes when a DNR ( Do Not Resucitate ) order needed to be signed the night of her stroke.
Tip: Although most of us hope we will never have to speak on the behalf of a parent, spouse, or other family member, discussing preferences regarding feeding tubes, ventilators, do not resuscitate orders, and other serious matters really needs to take place when one is healthy. In particular, if you have been diagnosed with a progressive disease, it is important that you have discussions with significant people, including your primary care physician prior to going into the hospital.
Observation #8 Medication Mishaps: I have a current outpatient with Parkinson's Disease who was recently hospitalized for several weeks at a local hospital. His family feels that his length of stay was extended, because the nurses "screwed" up the timely administration of his medications, including his Levodopa. Most persons with PD know the importance of taking medications on time, but, really this is no less important for individuals with diabetes, high blood pressure, or any other chronic medical problem. But, medication mishaps don't happen just in the hospital and with discharge home, many elderly persons and those who live alone may find self-mangement of medications a perilous task. Individuals may have difficulty handling small pills due to tremor, neuropathy, or vision impairment. Pills often are dispensed in a dose different than that prescribed ( for ex: a 1mg. Coumadin tablet requires a 1.5 dose) . Some pills are taken every other day, and some at a particular time of day.
Tip: If you live alone, or if you have any of the problems mentioned above, including memory problems,ask an adult child or trusted friend to assist you with weekly medication management. Or, ask your primary care physician if a nursing assistant is available to set-up your weekly medications. Failure to take prescribed medications correctly can lead to higher health care costs, due to hospital re-admissions, drug interactions, worsening of symptoms, and so on.
Throughout my mother's long hospital stay, she was surrounded by a large extended family who managed to nearly always have someone at her bedside advocating for her. As our visits ended each evening I gave her a backrub, and wondered about the many other patients who had no one touching them in a loving or healing way, guiding their care and their discharge safely home.