The Unexpected Patient

No day goes by without my thinking about Michael. After more than four years, though, I’ve emerged from thinking obsessively about the last months of his life, especially the 32 days when he was hospitalized in 2017. I lived with him in his room, as he was too ill and often too confused to make good choices about his daily needs. Being present for absolutely everything that happens to your loved one is a huge challenge, along with constantly interacting with the medical staff, who routinely enter a cancer patient’s space, day and night. Some time back then, one of my son’s friends from childhood, a woman who’d become a nurse, asked me if I’d write a descriptive piece about being an individual caring for a terminally ill family member. She wanted to share it on her podcast for both novice and experienced nurses. I ran across it today and decided there might be a benefit in sharing my thoughts on this blog. Almost everyone will one day be in a position of patient or caregiver. In our personal experience, we were fortunate to have developed warm personal relationships with several nurse and techs, with whom I still remain in contact, years after Michael’s death. Thank you, Melinda, Jenn, Vanessa, Vinnie and Michael. Those people are the backbone of the hospital, working long shifts under constantly stressful circumstances. I’ll never forget those special people who worked so hard for us. We were the lucky ones who got to go home which was all Michael wanted, to be in the comfort of his own space rather than in a sterile alien room. So here is what I wrote for the nurse’s podcast.

“Nurses and caring for the families of the seriously ill.”

So the challenges of nursing school are behind you and you are credentialed and ready to ply your skills. You’ve specialized in oncology care and are now assigned to the cancer floor where for a time, you’ll be paired with an experienced nurse who will help you get the feel of the unit, supervise you while you practice the administration of chemotherapy/targeted therapies, teach you to work with various feeding devices for patients unable to ingest anything orally, and instruct you in monitoring the multiple vital signs made more complex by the severity of the patients’ conditions.

As you go through your 12 hour shift, an unexpected gnawing anxiety starts brewing in your gut as you go about completing the checklist for each patient, examining the chart to ensure that the proper medications are delivered and taken, and making astute assessments intended for the attending physicians who will be coming to do their rounds. The anxiety isn’t what you expected – it’s unrelated to the sick person lying in the bed. The worry is for the unexpected patients, the family members and loved ones sitting anxiously in their bedside chairs. They are frightened and ill-prepared for the experience in which they are immersed, thrust by one phone call from the doctor’s office following a scan, a biopsy or a blood test, into a world of complicated words, strange equipment and unfamiliar science. Wives, husbands, partners, children and parents of these newly, and often suddenly sick people, were leading a normal daily life that now resembles nothing of the familiar. Their person in that bed looks different, perhaps bald, perhaps with the weeping skin of the newly-radiated, perhaps missing a body part, perhaps covered with the pustular rash of allergy to a new medication. And they hurt. Their meds make them nauseous and loopy and they say strange things. Their mouths may hang slack and open, their tongues covered with cloud-like patches of thrush. Their skin is delicate and papery and there are bruises from too many needles and IV’s. Their bodies may be skeletal. The people next to the beds are being forced to adapt to cancer, the great equalizer, the disease that is robbing their loved one of what was once “normal.” Vitality is replaced by weakness. There is silence. And except for brief conversations which are often vague and unsatisfying, they are separate, alone in the oddest way, right next to their companions, alone and frightened. The unexpected patients with no one designated to tend to their needs which they haven’t begun to understand. They are sad, short-tempered, grieving and angry.

You weren’t trained for these people’s needs. You watch your mentor for clues. Some of them perform their chores with efficiency and little acknowledgment of what is clearly an issue right in front of them. Others make an attempt to say something comforting. You notice a look of irritation on a wife’s face – whatever the nurse said was evidently a poor choice for what that woman needed. This is a common situation that occurs every day in hospital rooms everywhere that house the sickest patients, with their desperate families beside them, needing support and answers as they face the likelihood that death is the probable outcome for that family member lying in front of them. What are you supposed to do for these people? As the wife of a patient with Merkel cell cancer, which after years of remission and relapse, reasserted itself as leptomeningeal carcinomatous cancer, a devastating presentation with a survival prognosis of 4 weeks, we were stunned. Although I knew something was seriously awry with my suddenly strange partner, the cancer had escaped all the scans. Finally an ER visit, with me pressing for more analysis, secured the brain MRI which revealed the dark truth. I spent 32 days and nights in the hospital to advocate for my husband. I learned valuable lessons about what works, and what nurses can do or shouldn’t do, to help people like us. Here’s a list of suggestions to help you ease your own anxiety about working with these patients and their families and to truly sustain those who must bear up under all the pain and worry.

1) Acknowledge the family as well as the patient. Try explaining what you’re doing and why you’re doing it. Don’t just give them a perfunctory greeting and act as if they’re not there watching what you do. Knowledge empowers them and helps them understand what to expect.

2) Listen. Take a few minutes to ask the family what their concerns are, whether they understand what’s happening with their loved one, whether they need more information or assistance from the social services available in-house. Then help them make the connections they need.

3) Don’t assume that your belief system will work for everyone. Don’t offer the tenets of your religious preferences and ideas to the families. If they express an idea which seems in common with what you believe, you can share. But otherwise, keep those thoughts to yourself. Nothing is more offensive than being told what to think or feel by a nurse or doctor who doesn’t know your private beliefs. Never presume. The families feel more alienated and unhappy. Assuming you know their personal views creates more distance and discomfort.

4) Pat a hand or a shoulder. Sometimes there is simply nothing that you can say that will be of any real benefit to the family. But a pat on the hand or shoulder provides invaluable human contact which makes a person feel connected to the world. The human touch is critical as the very ill patients often cannot provide a reciprocal touch or hug to the people sitting next to them. The loneliness is profound. Having a brief friendly touch can help allay the increasing isolation. Of course, there are limits to be observed, but they should not preclude basic kindness.

5) Be proactive in seeking the assistance of your medical teammates. If you feel that a family member is in trouble, consult with those in counseling or pastoral care. Have them pay a visit to the patient’s room to see if they can offer support and advice. Often, the family is too befuddled to ask for personal assistance because the needs of the patient are dominating their thoughts. Self-neglect is frequent and undermining to the health of the watchers.

6) Empower yourself. Read and explore what is to be expected when a family is facing death. As with anything else, knowledge is power. American culture has a poor track record regarding the normalization of death. As a result, it has taken on a mystical and alien spot in our collective consciousness. Our own issues about how we feel about death and loss can clutter our behavior toward those actually experiencing the despairing feelings incumbent on their current situation. By demystifying your own understanding, you will feel more comfortable with the people you’re serving. Shutting down and acting as if death is business as usual is a convenient way to avoid your own fears and discomfort. Owning your feelings and confronting them can make you a much more able nurse and source of relief to those in the midst of facing death. Mutually beneficial acts are the goal. Breaking down some of our internal barriers can relieve the anxiety and feelings of inadequacy that arise when things get rough. So, these are some views from the patient/family perspective. On our journey, we were lucky to have some exceptional nurses who were able to grapple with both the tough and simpler parts of my husband’s illness. Others were less than adequate. I hope my thoughts are helpful to you who have chosen this powerful and impactful career.

So that’s what I wrote for my son’s friend’s podcast. I hope someone out there who’s reading this will find a valuable nugget whether you’re a nurse, a patient or a family member, by blood or not. Everyone needs support, especially in this complex world.