The heart patient’s not the only one in the room

by Carolyn Thomas    @HeartSisters  

Leslie Pitt is a marriage and family therapist whose husband Graham suffered a terrifying sudden cardiac arrest in his sleep while on vacation in Hilton Head Island, North Carolina. In this short and compelling video, she talks about the care they each received from 9-1-1 dispatchers and Fire Rescue personnel – care that not only saved Graham’s life, but significantly reduced her own post-traumatic stress. 

While the main focus of emergency responders is always on the person who’s experiencing a cardiac arrest, the psychological trauma of spouses and family members who witness the event is often overlooked amid all the drama. But not by Tom Bouthillet, paramedic, educator and former battalion chief, who explains:

“I’ve had the privilege of interviewing several spouses of patients who have suffered sudden cardiac arrest. What I’ve come to understand is that spouses are the real survivors. Each one has impressed me, but none more than Leslie Pitt. It’s definitely something we need to teach at all levels. It can make a big difference regardless of the outcome.”

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Q: How was your own spouse impacted by witnessing your cardiac event? Or how have you been impacted by witnessing your spouse?

NOTE FROM CAROLYN:   I wrote more about how a serious cardiac diagnosis impacts both the patient and the patient’s family in my book, A Woman’s Guide to Living with Heart Disease . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon  – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).

See also:

A wife’s heart disease teaches her husband a big lesson

Coping With Your Partner’s ICD and Heart Disease

When The Wrong Family Member Gets Heart Disease

Marriage Triples our Bypass Surgery Survival Rates – But Only if it’s Happy

10 thoughts on “The heart patient’s not the only one in the room

  1. The reason I mention what I did (below) was because it is part of the overall story of abuse. For both nurses that were alone with him while he was drugged and the one nurse actually said what she did is very telling and they both were laughing, one more uncontrollably. It is a critical care unit and a man was drugged and had been through a horrible experience plus they purposely forgot he had family. They thought he was gay and they questioned that I was even his wife. I have already spoken to the hospital and they said in a letter they can do whatever they want. Next time go elsewhere. I think the whole story of abuse needs to be told along with the other facts.

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    1. I certainly understand why the entire list feels so important (one issue after another, each one worse than the one before, adding insult to injury during a very stressful medical crisis). I’m just saying that if you want your official report to be taken seriously (and it sounds like, from their letter to you, that the hospital admin are leaning toward dismissing your concerns entirely), it’s always preferable to focus on the irrefutable facts first IF you’d like your complaints to be taken seriously. That’s just human nature. Lawyers I’ve spoken to have confirmed this approach. One told me “Focus on what’s MOST important to you. Try not to give so much detail that the important parts get lost.”

      That’s why I mentioned the lack of a signed patient consent form, for example. A missing consent is a clear error on their part and a potential patient safety issue.

      If however, you have already received a letter from this hospital saying “they can do whatever they want, next time go somewhere else”, this may unfortunately be the end of the road in terms of getting the resolution to your complaints on your own, unless you decide to take legal action or escalate your concerns to a larger Regional Authority.

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  2. My husband had a heart attack. We both are still suffering from PTSD.

    He was ignored when he told the staff that painkillers (mentioned Versed too) act on him w/ bad consequences–high/low blood pressure, decreased breathing, lethargy, trouble concentrating, and stay in him for many days. He told this to the first hospital and it was not on the records that transferred with him. They said he had a husband and his transfer was to a large catholic hospital who is on record protesting LGBT issues. I have never been male. He is not gay. He was given fentanyl without knowing. He wasn’t given Informed Consent and neither he nor I knew what they had in mind to do to him.

    They didn’t allow us to hear what treatment could be and then we could choose. They kept him isolated. They never told me for hours what was happening to him (I wasn’t informed what they were actually doing to him). He was transferred from one hospital to another and I was there. He was taken immediately and put on a cath table and w/o his permission they stripped him naked and left him that way for about 30 minutes w/o any gown or blanket. He started shivering violently. He remembers all of this. As I said they did not give him informed consent nor did they tell him what was going on except they said they were going to shave him and boy did they. Not the little area like in their PR spots and he’s not hairy so they did it for whatever.

    Afterwards, he remembers them telling him how much the suturing they were going to do w/o any numbing agent was going to hurt and he remembers how much it did. They also again thought it would be fun to leave him naked and cold for about 30 minutes. They then threw a gown and blanket over him and transferred him to a room. There the gown fell off during transfer. The nurse didn’t know how to hook up the equipment so there was a room full of techs.

    Due to the cath, he had to urinate a lot so the nurse kept him exposed while the room was full of techs. The nurse never remembered he had family waiting for him and finally we were able to find someone to ask about him after more than 2 hours. A laughing nurse going the other way said she had just come from his room & was coming to get us (going the other way?) but she was laughing the whole time.

    When I entered his room the other nurse had him exposed and once she saw it wasn’t the other nurse told him I needed to leave as she didn’t know how to check his groin w/o exposing him. I told her I was his wife. She didn’t believe me as she thought he was gay. She finally laughed and said she had figured out how to check his groin w/o exposing him. We are both traumatized by this abusive and violative treatment. I don’t know how he survived what they have done to him. JR

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    1. Hello JR – being the spouse of a heart attack patient (especially if you’re not in the room and don’t know when or if you’ll be allowed to see him) is understandably scary – no matter what the resulting quality of care is like. This sounds like an absolutely overwhelming experience for you and your husband. If you have not done so already, please consider submitting an incident report including these facts to the hospital’s Client Services department. You can also ask to speak to a hospital social worker who can help address issues and identify further community resources.

      If you do decide to report, focus only on the specifics of the KEY concerns (e.g. not how much or how little he was shaved, since there are protocols for such things that hospitals use – even though to us it may seem like way too much). Instead, focus on what you saw and heard specifically that was most disturbing and fixable e.g. the lack of informed consent – particularly if there is no signed consent form. That is also the kind of issue that hospitals have absolute control over, and can result in improvements for future patients too. Reporting a nurse for laughing, by comparison, is less convincing because it can devolve into ‘you said, she said…”

      I hope your husband (and you) are healing after this frightening event.

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  3. My husband was terrified that I may not survive, leaving him with two small children. He said he prayed, a lot! I now know he advocated for me (when I couldn’t) every step of the way. From getting me transferred for more advanced care to coordinating my cardiac and neurological decisions, and setting up crucial aftercare. He never felt he could leave the hospital for long, as he felt no one would be there for me.

    He was fearful after I came home that I would die. He definitely experienced his own PTSD. Even with significant support from friends and neighbors, it took about a year before he was able to return to daily activities without fear.

    It has been quite a journey.

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    1. Quite a journey indeed. I can only imagine… I wish that ALL healthcare professionals could read your comment here, Jennifer. What a weighty responsibility your husband must have felt, believing that nobody “would be there” for his wife if he left your side.

      As I was reading your story, I wondered if most hospital staff are even aware of the trauma that surrounds the family members and spouses of the patients they discharge home. Do they know that so many endure what your own husband did for such a long time? In our local hospital’s cardiac ward, we have a cardiac social worker whose role it is to provide psychosocial support to both patients and families, but there’s only one of her, and so many of them…

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  4. Interesting question! My husband was not comfortable in hospitals, had minimal knowledge of what to expect and was new to having my mother visit when I wasn’t home. He had been terrific in the 15 months of waiting for my open-heart valve replacement surgery, but when I was in hospital he wouldn’t have visited every day except that my mother was there to be with me and he was the driver.

    When I was first home he focused on his work, angrily ranting about what he saw as unreasonable decisions being made there. He left all my care and support to my mum, which was distressing to me.

    In retrospect, and after more cardiac surgery and other hospitalizations I can see that he was frightened, out of his depth, displacing emotions,and feeling inadequate. All because he didn’t know how to help me or deal with his unfamiliar emotions.

    Now he’s quite comfortable in the examining room or hospital room with me. He asks the doctors questions, helps me physically and emotionally at home and enjoys learning medical jargon.

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    1. Thanks so much for sharing that story about your husband’s remarkable transformation, Jenn. I think you have expertly nailed some of the reasons for his distressing early behaviours.

      Interesting (and what a relief for you!) that he has been able to come around to now actually being comfortable. I’ve seen studies that suggests he was not alone in his initial inability to cope with your hospitalization. A University of Washington study on partner abandonment among married couples, for example, found that men are six times more likely to leave a relationship because of a partner’s serious illness than wives are. One of the researchers concluded that the phenomenon of men who leave a sick spouse can be partly explained by “the lack of ability, compared to women, to make more rapid commitments to being caregivers to a sick partner.” That aligns nicely with your own observations.

      Your hubby’s transformation may not have been “rapid” – but he stepped up at last!

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  5. I experienced a similar thing when my mother went down with septic shock.

    I remember being “outside” of myself so to speak. And this is how I see it in my head to this day. The EMT could not get a heart rate or BP so I told him he needed to do the BP and I would do the heart rate. It took what seemed forever to get a reasonable number. My Dad is in the background doing what I was ordering( making copies of paper work etc.). I rode in the front of the ambulance and remained calm. I can see it all in my mind to this day.

    I did not break down until Mom had been in the hospitable several days. Eleven days later, she came home and it took most of a year to get back to normal. I think I experienced a mild form of PTSD for several months. It would have helped to have had a “Tom” present.

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    1. Thanks for sharing that story, Sue. How terrifying that ride in the ambulance must have been for you, despite your calm exterior! It’s interesting how we can somehow get through the initial trauma, only to face a delayed crash much later, like hanging on tight because we HAVE to.

      And YES we all need a “Tom” present to help us. What a gift that would have been…

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