A Candid Interview Between Nurse and Patient
By: Emily Glickman R.N
Emily: When is it ok to talk about dying and funeral wishes and their DNR?
Ariel: Let the patient lead the conversation on that one. The DNR should be done early on as a protective measure. Regarding funeral arrangements let patient lead the conversation. Pushing them on this subject is rough because it advocates a sense of loss and giving up. The same goes for your will and putting your assets and belongings together, just let the patient lead the conversation.
Emily: How can you ask how are you feeling today without diminishing the knowledge that the patient is doing not well, however you want to know if it’s a good day or not?
Ariel: I may not want to get into the nitty-gritty of how my treatments are going or explaining my illness and its side effects. I may be afraid you will be disinterested in me and unable to understand the medical jargon. You can say I want you know I am here to listen, not listen, to distract from anything and everything and to learn from you. Let them guide you by their words and listen to the meaning behind them.
Emily: What statements tend to help?
Ariel: I am here for you (as opposed to thinking of you or praying for you). That statement shows proactive care.
Your strength empowers me.
I want to be there for you in any way that makes you feel comfortable.
I am here to give you space or to check in at any time.
Emily: What lightens the mood?
Ariel: Distractions, Distractions, and Distractions. What do I mean? Any kind of funny videos, funny memes, anything that is short in duration. Our attention spans are constantly waning. Ask before sending anything our way. Why? A patient usually has an auto-responder on their email or wants to make sure their inbox is not overloaded during treatment. They want to be responsibility free. During this time they may want to be unresponsive. Our attention spans are very short and our resources and energies are very winded. Ask before telling stories about yourself that may be light-hearted. We may want to vent and have that time with you before we take a detour in lighter fair and distractions.
Send articles that are in list form, as opposed to in essay form. As much as I mock Buzzfeed, Bustle, Elite Daily and Gawker for being sites for our ADHD nation and kind of mindless, they are actually decent sites for patients with waning attention spans. Suggest binge watching a series together as a group activity. It will give us a sense of social normalcy. Treat the patient like they aren’t pitied. Also try to include them in your life.
Sending photos of your children holding get well signs with your name on it. Don’t assume pictures of your kids, your pets and your social outings are a cure-all to make us feel better. Everyone assumes sending pet/baby photos are our depression distraction. However, our depression and isolation runs much deeper. Let’s not simplify it. Ask us if sending those kinds of photos will make us feel better. Trust me we will be honest. Send personalized photos, by having the baby, puppy or friends pose with a get-well card with the patient’s name or make a personalized video with friends while out and about socially. It will make the fear of missing out syndrome lessen tremendously. Also, creating special videos, collages and really taking the time to make thoughtful social media posts.
Celebrating the past in photographic form instead of dwelling on an uncertain future with us. Don’t mourn us socially before we are gone. Do not post on our walls to communicate with us or ask us why we are missing in action. Illness is a privatized issue. We don’t want it aired in a public forum. Please be respectful of that factor. It looks like you are trying to prove something by letting your fellow friends/followers see that you are socially engaging with us. Unless it is our birthday or we post about remission, or a need for help, all communication should be offline as a rule of thumb.
Emily: What makes you feel like people hear you and your thoughts?
Ariel: Try not to look at your phone, put it down and I mean down in your bag or pocket on SILENT. Look the patient in the eyes, if you can touch them, do just that and embrace them. If they are crying make sure you are there physically and emotionally available to support them and not make their emotional breakdown about you.
Emily: What statements or questions make you want to strangle that person?
Ariel: Hope you are healing and feeling healthy.
Hope you are back to your usual self.
Hope all is well with you.
Keep fighting you will beat this.
Don’t give up.
How are you doing nowadays?
I hope you are feeling good.
Focus on the positive.
Don’t dwell in the negative.
Expect less from people it will make life easier.
I hope you are out and about.
I’m going through so much but it’s not half of what you are going through.
Who have you talked to or visited with lately?
Has this person or this friend reached out?
Are you going to post an update on social media?
I didn’t know because you didn’t post about it.
Miracle happen every day you will be one of them.
I am so glad to see your responding in a comedic manner. I am guessing that means all is well and you are healing.
Did you see this person’s photo, status or social media post? If you saw my social post then you would know…..
Asking about the dish on other people.
Asking for favors by ending the conversation with asking how are you feeling/doing to lessen the blow.
Sending well wishes, but also asking for a favor.
Anything with an agenda or with a loaded question.
Anyone who isn’t focused on you but keeps checking his or her phone.
Anyone who just sends thinking of you and can’t listen to you or handle you venting.
Also changing the path of the conversation to tell you how they are doing when they can’t handle your venting. If they send over niceties, but really don’t want a response. Why? Because they are being polite, but cannot truly be present for the answer. They are doing what they think they are SUPPOSED to do.
Emily: Is it better for people to share their emotions or keep them to themselves?
Ariel: I am mixed on that. As long as they don’t make it about them and their emotions are wrapped up in your pain and how it impacts you. I think sharing your emotions is crucial to showing you really care. I am touched when people break down and conversely also am touched when they stay strong. It only wrecks me when it’s my mom because her pain is my pain. Her tears are my tears. She also asked so many questions it made my head spin and I wanted her to live in the moment and listen, not come to me like it was an interview and survey session. She knew that and tried her best, she really did. She is a mom and a hover board and care bear.
It is best to let the patient lead the way. My mom always asked if I had any good visitors lately or who had visited lately and it drove me nuts. She also asked whom I had talked to recently. This wasn’t a time to keep social tabs and the last person I wanted to do that was my mom. My mom knew it was my trigger phrase and I made her aware of it. My mom also knew asking me when she could see me next before she was at the door put undo pressure on me. She said I guess I will see you soon??? (in a doubtful manner). I wanted people to appreciate the visit and not hyper plan for the next one. We live in a hyper-planned society. Asking for a follow up, or a confirmation, or sense of clarity is like a social tick. It is very hard for a patient to plan even one visit, let alone a follow-up one. Just continue to check in and we will let you know if we can handle another visit. Let us guide the way. Do not put pressure on a pleasant visit by ending in that manner.
Emily: When you have a decision to make do you really want the opinion from the person you are discussing it with? Or do you just want them to listen and in the end say it’s your choice?
Ariel: I want a real opinion. I do not want a passive sounding board. If I wanted someone to agree with me I would talk to my shadow. I respect honesty more than trying to appease me ALWAYS. Have a voice, be vocal and be opinionated. Be REAL and most importantly be AUTHENTIC. Do not kid glove me. I have a voice that I would rather not have muted, so in turn, I respect others who vocalize their opinions.
Conversely sometimes it is good to just to listen and be present and let us talk it out without prevailing opinions. We often listen to reply, not listen to LISTEN. Sometimes by talking it out we can come to an optimal conclusion on our own and feel independent and empowered.
Emily: Do you want people to offer help?
Ariel: YES always, even if we think we are self-sufficient. We will lose those powers and need to know we can lean on them. DO NOT offer to help and run errands and show up if it’s just in passing or to be polite. If you can’t come through, but think that’s what you are supposed to do it is offensive! I had lots of THOSE and it drove be bananas!!
Emily: What needs are wanted most?
Ariel: A listening ear and supporting my family with visits and distraction. Especially when the patient isn’t up for visitors. Whether it’s taking my family for coffee or a walk in the hospital or asking if they need magazines, a pre-loaded iPad with downloaded content (the hospital internet it slow), DVDs, a DVD player, a tether attachment for faster wireless, an extra phone or iPad charger. Check in with their family. If they are staying overnight with the patient, ask if you can swing by their home to bring them items from there. See if their family needs anything while sleeping in hospital chair or at home, as well as providing food and getting meds for the patient and the family.
What bothered me the most during my illness was everyone who knew me also knew my dad (my hero) was very sick. He was homebound, had a 24-7 nurse and was sidelined with Parkinson’s and Dementia. Do you know how many people I asked to go see him? Not random people, friends who knew my dad and could evoke his memory senses. I probably reached out to over 50 friends and family over the last 4 years or so. Do you know how many went up to heights to see my dad and mom? Four people in the span 4 years. Only 1 friend in the last year. This fact still breaks me and continues to do so.
Emily: What do you really want people to know?
Ariel: It’s important to listen and not clam up when we are honest. It makes us shut down and feel like an ass for opening up when you allowed us that opportunity to be open. (See the helpful advice section and pieces on trigger words, how to present and how to prepare for a visit).
When you don’t respond when we are blunt or honest it’s the worst feeling. We wished you hadn’t reached out at all, especially if you can’t handle a candid response. For example, like texting a guy/girl you like but never planned on responding to because of the “what if” factor and never hearing back. Therefore effectively putting yourself out there to be rejected and saying to yourself why did I do that? I should have gone with my 1st instinct and waited patiently.
About the Interviewer: Emily Glickman is registered nurse who has worked at different hospitals across the country. She specializes in ER, ICU, NICU and hyperbaric chambers now works at a hospital in Philly (Children’s Hospital of Philly). Ariel and Emily have been friends since childhood. They went to Camp Monroe together and forged a strong friendship and an unbreakable bond. Emily is part of the Fixler-Wexler family.