Cardiac care for the whole patient – not just the heart

~ Carolyn Thomas

A serious medical crisis can yank you unceremoniously right out of your normal game and hip check you into the boards, leaving you metaphorically bruised and literally traumatized. The freshly-diagnosed wear a familiar look – that look which seems to ask plaintively:

“What the hell just happened to me, and what’s going to happen next?”

But it’s often a delayed question, surfacing only after the most serious part of a health crisis has been survived, finally allowing reality about what’s just happened to you to sink in.  

Ironically, our ability to physically recuperate and heal may have as much to do with the psychosocial stress accompanying the crisis as it does with the heroic medical interventions that saved us.

What causes this psychosocial stress? 
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An Institute of Medicine report accurately describes the fears and worries that accompany most life-threatening illnesses, regardless of the diagnosis.(1) 
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These include basics like:
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  • The physical pain and exhaustion of the condition and its treatment.
  • Not understanding about the diagnosis, treatment options, and how to manage your illness and overall health.
  • Not having family members or other people who can provide emotional support and practical day-to-day help such as performing important household tasks.
  • Not having transportation to medical appointments, pharmacies, or other health services.
  • Financial problems, ranging from concerns about health insurance to payments for treatments, or problems paying household bills during and after treatment (or, as in my own case, financial problems caused by an inability to return to work).
  • Concern for how family members and loved ones are coping.
  • The challenges of changing behaviours to minimize impact of the disease (smoking, exercise, dietary changes, etc.)

When I read this list recently, it struck me that when I was being discharged from CCU (the Intensive Care unit in cardiology), not one of the cardiac nurses, residents or cardiologists who cared for me during my post-heart attack hospitalization had said one word to me about any of the important and commonly-experienced psychosocial issues on this list.

Not one of them asked, for example, if I’d be able to afford to buy the fistful of expensive new cardiac meds I’d been ordered to take every day for the rest of my natural life after surviving what doctors call the ‘widowmaker’ heart attack.
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Not one asked if there was anybody at home to help take care of me there, or if there was anybody at home who needed me to take care of them.
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Not one asked if I’d be returning to a high-stress job, or even if I had enough banked sick time or vacation days to take sufficient time off to recuperate before going back to work.
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Such real life issues are simply not the concern of most of our health care providers.
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It’s almost as if they are unaware of the considerable research that suggests ignoring the psychosocial issues of their seriously ill patients increases the risk of poor outcomes and higher hospital re-admission rates down the road.
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Indeed, the IOM report adds that patients may pay a hefty and under-recognized toll when experiencing the kind of psychosocial stress that can accompany any medical crisis:
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“Those suffering from psychosocial issues can have difficulty remembering things, concentrating, and making decisions. These problems can also decrease patients’ motivation to complete treatment, take their medications, change unhealthy practices such as smoking, and decrease their ability to cope with the demands of a rigorous treatment process.
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“There is also growing evidence that stress can directly interfere with the working of the body’s immune system and other functions.”

As cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once explained:

     “Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain. And most are not trained to cope with mental health issues.”

Not only are hospital staff not focused on the whole person in front of them, when that person is ultimately discharged from hospital, a written care plan rarely accompanies them home, as I wrote here previously:  

I     Many factors post-discharge can cause a patient to need re-hospitalization. These include the person’s ability to keep up with their medications at home, or to make follow-up visits to a personal physician – both issues that can and should be addressed with a competent discharge plan.”

According to the Institute of Medicine report, studies on patients diagnosed with a wide variety of chronic illnesses (including but not limited to heart disease, diabetes, arthritis, chronic obstructive lung disease, depression, asthma) have identified specific obstacles that get in the way of how well patients are able to realistically manage their illness and health (Wdowik et al, 1997; Riegel and Carlson, 2002; Bayliss et al, 2003; Jerant et al, 2005).

These obstacles include things like distressing symptoms, poor communication with physicians (with resultant poor understanding of their illness and how to manage it) or lack of family support at home.
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And worse, patients are often unaware of resources that may be available to help them overcome or manage these obstacles. Even when they are aware, however, limitations in mobility, fatigue, pain, transportation problems or cost issues often prevent them from taking advantage of the resources that could actually help them (Jerant et al, 2005).
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As in most areas of medicine, it seems that once you survive the immediate health crisis, the medical team seems to breathe a collective sigh of relief – and then shifts attention directly to the incoming wounded who need your hospital bed more than you now do.
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So that may be why it’s only when we are finally back at home, away from the reassuring 24/7 monitoring of our medical team in hospital, that reality slowly begins to trickle back in.
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This is particularly true among certain populations, say the authors of the IOM report. For example, psychosocial problems – and the effects of failing to address them – can appear magnified in these demographic groups:
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  • vulnerable and disadvantaged populations such as those living in poverty
  • those with low literacy
  • cultural minorities
  • those over age 65 who are more likely than younger patients to experience the compounding effects of other chronic conditions that occur with aging

What’s the price of ignoring psychosocial issues that affect patients so profoundly? Increased rates of hospital re-admission, lower rates of adherence to recommended treatments, inferior quality of life, and worse longterm outcomes/mortality.

Doctors, you choose..

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(1) Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler NE, Page AEK, editors. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington DC: National Academies Press (US); 2008. 1, The Psychosocial Needs of Cancer Patients.

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NOTE FROM CAROLYN:  I wrote much more about the many psychosocial issues that are common after a cardiac diagnosis in A Woman’s Guide to Living with Heart Disease  (Johns Hopkins University Press, 2017).  You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).

Q: How have you experienced medical care that addressed you as a whole person?

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See also:

Handling the homecoming blues: the third stage of heart attack recovery

Study: “91% discharged from hospital without care plan”

Where’s the “survivorship” model for heart patients?

News flash: care improves when doctors consider the whole person

Is your doctor paying attention?

How expecting recovery can help heart attack survivors

“Everybody has plans ‘til they get punched in the mouth”

Living with the “burden of treatment”

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Published by Carolyn Thomas

17 thoughts on “Cardiac care for the whole patient – not just the heart”

  1. I found the team who came into my hospital room the day befor discharge – which included SEVEN people (social worker, nurse, and I don’t remember HOW many other ‘specialties’) – and which all I wanted to do was to have them leave – were very intrusive and opinionated. But at least all those areas were technically covered (though I heard them discharge one of my roommates and they didn’t listen very well – just wanted to get through their checklists).

    I think if you insisted that each one of those people slow down, listen to you, and answer your questions, it would help. I did that with the cardiologist from my practice group who I’d never seen before but came in because she was on call that day. She had everything wrong – I made sure she had it right before she left. She kept rattling on – I kept telling her she HAD to slow down because she couldn’t expect understanding, much less compliance, if she didn’t slow down and let me write it all down. I think we were okay – after I made her take four times more time than she would have.

    When husband came, I was able to reread my cleaned up notes – and he, and my cardiologist the next day, were both impressed. But only because I worked so hard at it. Most other people would have gone home without the information.

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    1. SEVEN people in your room the day before discharge, and each one covering a different element of discharge planning? That sounds like a dream fantasy to most heart patients, Alicia! I never even met our hospital’s cardiac social worker until two months after my discharge when she was the guest speaker at a cardiac education program I signed up for. Asking our healthcare team members to slow down so we can understand is our right and our responsibility (if we’re not overcome by post-heart attack STUN that is!)

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      1. I mentioned this to point out that patient concerns and complaints are making a difference. Care now is more driven by ratings – from those very same patients. The hospitals are making an effort to do better jobs in those areas.

        Your dream – my nightmare. Funny, that. All they wanted was to check their boxes off and get out of there. If I HAD needed help, it would have been helpful.

        But even then, there were too many of them at once.

        Now I realize I was having the side effects of not being able to sleep or think in the hospital from the drugs – fortunately, my husband was making the drive twice a day to be there for me. I’m sure I would have stayed – very hard to leave against medical advice when they are so sure of themselves – but H made it bearable – and I didn’t want him to have to deal with me at home by himself if something happened. Imagine putting that on your spouse.

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  2. Heart disease can have an impact on more than just your heart. Making sure you have a support system in place such as family and friends as well as having open and honest dialogues with your cardiologist and other physicians is important. It is good to have a base of support when dealing with something like heart disease.

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  3. Once again, dear Carolyn, you have hit the nail on the head! After more than a year of not seeing the cardiologist (and then only seeing him once for 10 minutes since discharge from the hospital), my family doctor referred me to the cardiologist (at my own request).

    The cardiologist answered many questions in the 10 minute visit and as I was leaving, actually going out the door, I told him I was able to get my heart rate up to 90 (usually it is only 48-50 with my meds) on the treadmill and asked was that ok or should I try for higher?

    His response was that I should try for as high as I could get it. Foolishly I took him at his word and pushed myself, resulting in a flare up of fibromyalgia, left hip bursitis, torn left buttocks Gluteus Maximus and L 4/5 herniated disk.

    Now one could argue that it is all my own fault. I knew of these chronic issues with the left side of my buttocks, spine and leg but in my own defence, I was so concentrated on doing all I could for the exercise regime of my heart that I did not focus on the instability of my musculoskeletal system.

    Since then I have been barely able to walk or sit without excruciating pain which is requiring Tylenol 2s and rest. Six weeks of no exercise at all is frightening!

    I will say one thing though, the focus on my heart issues has subsided somewhat since I am now concentrating on managing the pain in my leg and butt! :-).

    My point in all of this is that he was only thinking of my heart, not the rest of my body, nor my age, nor other possible mobility issues.

    Each specialist is concerned only with their own specialty, not the whole patient! It takes time to talk a patient through their challenges, like weight, exercise capability and other life circumstances such as support systems, psycho-social concerns and finances.

    I must accept part of the blame though. But then when we have a life threatening condition like heart disease it becomes our main focus and we too can forget other body issues.

    Best wishes from Hop-a-long.

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    1. Hello Hop-a-long! Yours is an excellent cautionary tale for all patients. There is no cookie cutter one-size-fits-all recommendation, ever. Each of us needs to determine when medical advice that might work for some may not be at all appropriate for us! You’re so right – heart disease can be so all-encompassing that we believe we must do anything and everything to address risks for future cardiac event – even when it hurts. Hope you feel better very soon.

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  5. I was lucky enough to be treated like a whole person while in the hospital, but then I was being considered for a transplant. They had Social Workers on staff with the cardiology group helping patients deal with a lot of these aspects of recovery.

    It’s why now at 55 years old, I’m hoping to begin a MSW program later this year to help others in the same situation as I found myself 3 years ago.

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  6. I’ve seen my cardiologist twice, first time he was wearing a mask and said “You had a heart attack.” Then the fade out, because I am a lightweight when it comes to sedatives. The next time I saw him on a bill board touting the great heart “Institute” we have right here in our midst.

    In the three years since my heart attack and stent placement I’ve only ever seen a PA-c and she is not good with anything but harassing me about my lipids and weight. I have also been in and out of the ER with heart symptoms, every test has been run except actually taking my heart out and looking at it. I had to finally diagnose myself with Panic Attacks to get any relief and keep me out of the ER with “fake heart attacks.”

    Now, I’m having problems with tachycardia, the first question that was asked of me, “How do you know that word?”

    Ummmm…I’m an RN and I know other big words, too…but I’m mostly concerned about what is happening to me now, not my vocabulary. My only advantage is I can be a bit more accurate in describing the symptoms I am having… doesn’t mean I know what is going on or why.

    I guess what I am trying to say is, No, my cardiac team does not treat me as a whole person. Thank goodness for my co-workers who help me calm down when my heart rate is up and they watch me for heart symptoms.

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  7. “Q: How have you experienced medical care that addressed you as a whole person?”

    Yes, I have, but only after ditching my first cardiologist, a shut-up-and-take-the-meds type. In my county we have over 100 cardiologists and I found a great one on the second try. Thanks to your blog, Carolyn, I stopped settling for less. Only sorry I waited 5 mos!

    I think I’m like most– I don’t expect to like all the answers or even get all the answers. I just want my questions acknowledged and responded to as if I have a brain in my head.

    Question: If a doctor starts his patronizing comments to me with “Dear,” can I address him as Snookums?… Dr. Snookums?

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    1. Holy moley! You have over 100 cardiologists in your county? You must live in a pretty nice place where cardiologists want to live, too. Many heart patients – particularly in rural areas – consider themselves lucky to take what they can get. I

      And I think saying “Dr. Snookums” rather than just “Snookums” is the proper etiquette, don’t you? I laughed right out loud at that one… 😉

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  8. OMG! Is this a timely post! Carolyn, my dear, you have a knack for bringing me what I need just when I need it most!

    I have become increasingly aware of how much my “whole me” is not what my doctors see… they see parts of the whole and seemingly are unaware of the rest of me and how those other parts have an impact on who is it is that is ME.

    I am back in AFib after a grueling 2 year recovery from open heart surgery to repair my Mitral Valve and do a Maze procedure to stop the AFib. My ElectroPhysiologist says he is hesitant to do an ablation due to my worsened heart failure (diagnosed in 2001) so I can just live with it and I’ll be fine… “Lots of people have Afib and they do fine!’

    No thought of my emotional reaction to hear that my heart will just stop one of these days as it beats itself to death. So I am seeking other opinions in other states and have found 2 docs who specialize in cases like mine….. I have no illusions they will focus on anything but my heart but at this point… that’s just fine…!!

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    1. Sorry to hear about your AFib relapse – I’m really hoping that your two new docs will be able to solve the mystery. When patients hear things like “Lots of people have XXXX and they do fine…” it makes me think that we could take this in one of two ways: 1. reassurance because we might be one of those who do fine, too, or 2. frustration because at the time it can seem irrelevant how others out there are doing because THEY ARE NOT ME!

      Good luck to you, Sunny!

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  9. “Q: How have you experienced medical care that addressed you as a whole person?”

    My doctor wanted to prescribe an antidepressant! Pfffft! Oh, and he told me to lose weight. Evidently my ‘whole person’ was too ‘whole”.

    Yeah, I know—– sometimes an antidepressant is just what a person needs. IF they have have primary depression.

    And yeah, losing weight is always a good idea if you’re Matthew McConaughey.

    Sorry for being flippant. I guess the answer to your question is I don’t think my doctor addresses me as a whole person. I hope others do get that kind of medical care. Looking forward to seeing other responses.

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