Tips for Nurses Caring for the Seriously Ill from the Family Perspective

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I’ve written many posts about how to provide care to patients in various scenarios. However, I have yet to provide any information from a very vital perspective; that of the patient and family.

A long-time personal friend had a very lengthy experience deep in the depths of healthcare. She and her family encountered many nurses during this period of time. I asked her if she could write a post describing tips for new nurses on how to be supportive when caring for patients with very serious and life-altering diagnoses.

Thank you, Renee for sharing your experience and insights.

I am deeply honored to share this with all of you and hope you find it helpful in your growth as a nurse.

Caring for the Seriously Ill

Caring for 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 and supervise you while you practice the administration of chemotherapy, work with various feeding devices for patients unable to ingest anything orally and monitor the multiple vital signs made more complex by the severity of the patients’ conditions. You are scared, but confidant that you can become skilled at caring for the seriously ill.

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 and examining the chart to ensure that the proper medications are delivered and taken and that you make astute assessments intended for the attending physicians. The anxiety isn’t what you expected-it’s unrelated to the sick person lying in the bed.

The worry is about the unexpected patients, the family members sitting anxiously with their loved ones. They are frightened and ill-prepared for the experience they find themselves immersed in, 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.

The wives, husbands, 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 or the pustular rash of allergy to a new medication. And they hurt. Their pain meds make them 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 IVs. Their bodies are skeletal. They are being forced to adapt to the great equalizer, the disease or physical condition 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 alone and frightened. The unexpected patients with no one to tend their needs. 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 acknowledgement 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 the 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 all around the country where the sickest patients are housed with their desperate families beside them, needing comfort and answers as they face the fact that death is a likely outcome for that husband or child or parent.

What are you supposed to do for these people?

Your training hasn’t addressed this most common issue.

As the wife of a patient with leptomeningeal carcinomatous cancer, who spent 32 days round the clock 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 me.

Here’s a list of suggestions to help you ease your own anxiety about working with this population’s families and to truly help those who must bear up under the pain and worry.

1) Acknowledge the family as well as the patient. Patient advocacy is so important but the patient is not the only one in the room. Try to explain 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 alienating than being told what to feel or think by a nurse or doctor who doesn’t know your beliefs. The families feel even more alienated and unhappy. Assuming you know how they feel creates even more distance and discomfort.

4) Pat a hand or shoulder. Sometimes there is simply nothing that you can say that will be of any real benefit to the family. A pat on the hand or shoulder provides an invaluable human contact which makes the 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. Having a friendly touch can help with the increasing isolation. Of course, we understand that 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 help because the needs of the patient are dominating their thoughts. Self-neglect is common among family members and caregivers.

6) Empower yourself. Read and explore what is to be expected when a family is facing death. As with anything else, knowledge is power. Our culture has a poor track record of normalizing 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 around those actually experiencing the 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 own 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 the both the tough and simpler parts of my husband’s illness. Others were less than adequate.

Thanks to Kati for letting me use this forum to share what I hope will be helpful to you who follow this blog.

Renee Pollock

Any reproduction of this content without permission from the author is prohibited. Renee Pollock has licensed Kati Kleber and Kleber Media Incorporated to publish this content on the FreshRN Blog.

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