It’s often said that pediatricians and veterinarians have the hardest jobs in medicine because their patients can’t tell them where it hurts. But the same is often true for the health care professionals treating older patients who can’t communicate well or don’t fully understand what’s being explained to them.
So, whose job is it to advocate for these patients? The answer is that everyone on the medical team must play a role, working together for the good of the patient. In practical terms, this means families must be considered part of the team.
Often families or other caregivers can fill in the gaps, serve as interpreters and connect the dots for patients who have cognitive loss, confusion, or are not sufficiently organized to report accurately on history and symptomatology. By engaging with family members, physicians, and nurses can glean important information that may affect decision-making about diagnosis, treatment options, and appropriate testing modalities. The additional input may conserve valuable time for the workup, prevent delays in initiation of appropriate treatment, and sometimes make the difference between life and death.
Moreover, in an era when overtreatment of older adults is under tremendous scrutiny, the surrogate may provide valuable information that wouldn’t otherwise emerge. The trick is to make the most of the time spent with family, manage the process, and focus on getting the salient details. The investment is well worth it.
To start, it is helpful to remember that being in the hospital is a fraught time for patients and their families. They are likely feeling overwhelmed, anxious, scared, or confused — maybe all of the above. Patients who are sick may not be able to communicate much at all. Families may babble with too much information and leave out important facts altogether. They may also be muddled or perhaps geriatric themselves and get some details wrong. Setting the right tone for the conversation is key. Sit down and talk face to face, preferably at bedside if the patient is alert and can participate or at least hear what’s being said. If that’s not possible, find a quiet spot in a lounge or conference room.
Ask that one person speak for the family and assure them that you care and are interested in their input. Be clear about how much time you can spend and how you want to optimize the encounter by focusing on the priorities. You may have to gently redirect the conversation to stay on topic.
It is worth asking if the patient has a history of similar medical conditions, psychosocial issues, substance abuse, or other factors that may be embarrassing to discuss. Some patients and their families are not comfortable with these topics, so a little patience and understanding can go a long way.
Review the patient’s current medications and make sure they match up with the hospital record. Go over the health and physical record with the patient and family to confirm that it’s accurate. Sometimes it is easier for the family to see the record and react, rather than just discuss it.
A critical area of family input involves providing a better understanding of the patient’s preferences, values, wishes, and priorities that transcend the advance medical directive and can affect the goals of care. When tough decisions must be made, a physician can help guide the process when she knows more about the patient’s quality of life considerations and personal goals such as attending a grandchild’s wedding.
If the patient is likely to be in the hospital for several hours or days, remind the family to bring assistive devices from home such as eyeglasses, hearing aids, dentures, a cane or walker to help with orientation, prevent delirium and enable the patient to participate in care and treatment decisions — palliative care decisions. When tough decisions must be made, a physician can help guide the process when she knows more about the patient’s quality of life considerations and priorities along with goals such as living to see a grandchild’s graduation or wedding.
Another important issue, ideally beginning in the emergency department, is a serial assessment for delirium in older patients, especially if dementia is present at baseline. Family members can be helpful in describing if there was cognitive impairment prior to the presentation. They will also be sensitive to the progression of symptoms and should be encouraged to report any signs of emerging delirium, such as agitation, heightened confusion, or extreme drowsiness, right away. Many common hospital protocols are inscrutable to patients and families and may require some explanation. For example, it may be necessary to explain that the term NPO means nothing by mouth and that even a glass of water could cause serious peril before a procedure. Similarly, aspiration, isolation, and fall precautions — intrinsic to the mindset of health care providers — are foreign territory to many patients and families and will require an explanation of rationale.
If there is a high likelihood that the patient and family are likely to return to the hospital, it is worth taking the time to counsel about the importance of preparing for future visits. Talk with them about go-packets with medications, up-to-date medical history, provider contact information, advance directives, “do not resuscitate” orders and medical orders for life-sustaining treatment.
Communication is key to patient safety, outcome, and satisfaction. Encourage the family to take notes, prepare questions. And provide information during hand-offs, nurse reports, changes across services, and all transitions of care, including the patient’s primary care physician. In the context of the busy hospital environment, important information can easily slip through the cracks.
Yes, these matters take a little time, but they don’t have to be covered all at once. In fact, it is probably better to space out the education to make it easier for the patient and family to retain. But either way, the time spent is a good investment that will undoubtedly contribute to the patient’s wellbeing in the hospital and recovery at home. It might even save a life.
Bonnie Friedman is the author of Hospital Warrior: How to Get the Best Care for Your Loved One and can be reached at Hospital Warrior. Sara L. Merwin is the co-author of The Informed Patient: A Complete Guide to a Hospital Stay.
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