Having a loved one who is suffering a critical illness is a stressful experience. Financial concerns, family disruptions and fear of bad outcomes (including possible death) are just some of the things that make being in the ICU a terrible experience for many. Here are some of the best ways of dealing with this situation.
Gauge how appropriate your presence in the situation is. If the patient is your spouse, parent, close sibling or child, fine. If you are the sick person’s third cousin, or the best friend of the patient’s sister, you might want to consider stepping back and accepting a very muted involvement in things, if not leaving entirely and offering support from afar. Every situation is different, of course, but in general, doctors and nurses rely on having only the closest family members hanging around, asking questions and jockeying for visits with the sick individual.
A totally different case would be later on, when the patient gets transferred to the regular hospital floor, or to a rehab center. At that time, visits from extended family, work friends and acquaintences may well serve to brighten a patient’s outlook on things and break up what can become a long chain of boring and somewhat meaningless days in confinement. When someone is critically ill or in danger of dying though, respect the person’s privacy and step back, allowing them to have much needed time with their closest family members. It may be difficult to think about possibly never seeing that person again, but its important to put the needs and wishes of their more close family members ahead of your own. If you are suffering from any illness yourself (especially a contagious one) stay away from the hospital entirely, no matter how close you may be to the patient. In general, children are prohibited, with good reason, from the ICU.
Pick a spokesperson for the family. If you are the sick person’s next of kin, designate clearly to the nurses and doctors who they should approach for information, consent and information sharing. Chances are good, if the patient is gravely ill, the next of kin will be needed to sign forms and consents throughout the hospital stay. If there is some reason that the next of kin is unable or unwilling to perform this essential task, collaborate with the healthcare team on finding a suitable and ethical alternative person. If the next of kin is willing to perform this task, but unable to deal with the stress of disseminating information on the patient’s condition to the rest of the family, pick a back-up person who agrees to perform this function in place of the next of kin. Nurses in the ICU work hard to keep sick patients alive and comfortable and being called to the nurses station to give updates to endless family members over the phone pulls them away from this essential task. They would much rather share the ever-evolving information with a small number of immediate family members and have one of them take the responsibility for updating the rest of the clan.
Set up a password. The abovementioned being said, be aware that no information whatsoever will be shared with anyone over the phone if a password isn’t set up. Due to strict laws enacted to protect patient privacy, hospitals generally require patients to set up a password in order to release any information over the phone. This protects a patient from having his or her private medical information released to any gossipy co-worker looking for something to dish about. Once a password has been set up, give it out only to those closest to the family with whom the patient has given express consent to having information shared. Its best to choose something that close family members will remember easily, yet won’t be obvious to the aforementioned gossipy co-worker. If a password isn’t set up, be prepared to hear, “I’m sorry but I can’t give you any information on that patient” from the nurse or secretary answering the phone. It isn’t them being mean. It’s the law and their professional license is at stake.
Be respectful. The ICU can be a very intimidating place. In general, hospital administrations have relaxed historically rigid rules involving visitation to extremely sick individuals. It wasn’t uncommon in the recent past for patients on ventilators in the ICU to be allowed only one to two visitors every other hour for 5-15 minutes. In most cases, that is no longer true. Healthcare workers have begun to realize the importance that visits from loved ones has on the psychological well-being of even the sickest patients. However, you will not likely find a hospital where the ICU nurses allow constant visitation from family or frequent comings and goings on these extremely sick patients. You will not be allowed to spend the night with the patient (in their room) and you will be discouraged from staying for long, uninterrupted visits. The reasons for this are many-fold.
Patient safety is the main reason. When nurses are changing shifts, they communicate crucial information regarding the patient’s care to the oncoming shift in a short amount of time. They need to be able to concentrate on doing that, while simulataneously monitoring the patient’s vital signs and fostering a seamless transition from one caregiver to the next. Having an anxious family member listening in, asking questions, or making requests for non-crucial things at this time (such as additional blankets, drinks of water, etc…) can be very distracting and impedes the handoff process. In general, nurses in the ICU work 12 hour shifts.
They are usually tired at the end of a shift and sometimes not as patient with such requests as they would generally be otherwise. Medication administration is another time when visitation may be partially or totally limited. The medications used in the ICU are extremely powerful and small errors in their handling and administration can result in fatal outcomes. For safety reasons, nurses need complete concentration when preparing and giving such medications. No matter how close you may be with the patient, sometimes your presence can cause undesirable fluctuations in their vital signs.
A patient who is on life support experiences constant changes in their hemodynamic situation, which controls things like their blood pressure, oxygenation and organ function. ICU nurses are trained to be in tune with these fluctuations and if the stimulation provided by having a family member (who is most likely anxious and stressed out himself) is having a negative effect on the patient’s condition, the nurse will gently direct the family member away from the bedside. Its for the patient’s well-being. Last but not least, the nurse is also trained to know when YOU are at your breaking point. If the nurse feels that you are overdoing it, he or she will ask you to go home, get a good meal, get some rest and come back later. You will be better equipped to be there as a support person if you take this advice.
Avocate for your rights as family; this is a lot easier to do when it is a few close family members as opposed to a dozen or so overrunning the cramped waiting area. If there are frequent problems associated with a particular patient’s family, administration can become difficult to deal with. If everyone has been on their best behavior and set a precedent for respectfulness in the ICU, ICU waiting room, and hospital in general, it will be noticed and it will not be difficult to find advocates when a small problem arises. If you have any issues regarding the quality of the care being given to the patient or the readiness of the healthcare team to work collaboratively with the family on the patient’s plan of care, ask to speak with the charge nurse before you get extremely upset and agitated. Try not to make it personal. Assume that any problems are merely a misunderstanding and make it obvious that you are committed to solving them and maintaining a positive relationship with the doctors and nurses in charge of that patient’s care. However, if a severe deficit IS apparent in a specific worker’s skill level or professionalism, ask to speak with the Nurse Manager or Unit Director instead.
Have the person’s name and be prepared to share specific information about the incident or behaviour in question. Ask that the person be removed from the care of your loved one and be firm. It is your right. However, administration quickly tires of patients and family members who develop a list of people who can and can’t care for their loved one or who have a constant laundry list of woes. It may be said that the squeaky wheel gets the grease, but in the ICU, the squeaky wheel might just get tossed out. Walking around with a notebook, writing everything down and demanding constant justification for every action taken by the healthcare workers will not result in better care. Approach is everything. Try to remember that the nurses and therapists are there to provide the best care for your loved one and the more time they can spend at the bedside, pouring over the chart, or collaborating with one another on that care the better. Time spent letting family members in and out, explaining minutia to family and friends, listening to you describe YOUR latest health problems and trying to make sure that you are safe and taking good care of yourself will only pull the nurse away from those essential tasks.
All that being said, you must be aware that there are limitations to what the ICU staff can do for your loved one. Sometimes, the medical staff will continue treatment in a hopeless situation out of fear and dread of telling the bad news to the family. When things start to look like they may not turn around, ask for frequent guidance on end of life or quality of care issues. Ask the healthcare team for realistic updates regarding the person’s chances for survival. Talk to the nurses and ask to see a hospital chaplain, who is trained in helping family members cope with end of life decisions. A clueless family that keeps insisting that doctors “do everything” can end up missing out on the precious last hours of their loved one’s life, as those final moments will be spent laying naked in a hospital bed with staff jumping up and down on their chest, shocking their heart and performing a futile resuscitation because the family refuses to accept the inevitable. Far more desirable to most would be a hospice or palliative care consult, removing the unpleasant and sometimes invasive monitoring equipment and allowing the terminal patient to pass naturally and comfortably into the next place with family close by.