Learning to live with “infinite losses” in chronic illness

by Carolyn Thomas  ♥  @HeartSisters

In 1907, Miss Helen B. Pendleton was hired as the first social worker ever at Johns Hopkins Hospital in Baltimore. The only employee in this new Medical Social Work department, Miss Pendleton was given an office that was also the storage room for surgical supplies. Her role was to help patients address problems ranging from clothing to housing, child care, medications, leg braces, eyeglasses or dental work.

Her boss was the legendary Dr. William Osler, first chief of medicine at Johns Hopkins. Years ahead of his time, he recognized the importance of addressing both the emotional and physical condition of patients. He even established an innovative home visiting program in which his medical students learned about the living conditions and personal problems of their patients.(1)

He believed that these were often the cause – not simply the result – of illness.

Hospital social workers helped to address not only the practical needs of patients before discharge, but more importantly, they offered psychological support to patients and family members during medical crises.

Modern social work is focused on our individual and personal issues, but also with important broader social issues like poverty, unemployment and domestic violence.

But today, with increasingly shorter hospital stays and the resulting increased work demands for cardiac social workers, the freshly diagnosed modern heart patient may not even see a cardiac social worker before being sent home from hospital.

That is just what happened after my own heart attack. In fact, the first cardiac social worker I ever met was the guest speaker at the last class of a 7-week Heart To Heart cardiac education program for patients, two full months after my hospital discharge.

Frankly, I was a mess by then, convinced by my not-yet-diagnosed coronary microvascular disease symptoms that another heart attack was about to hit any minute now, and obsessed with tidying the apartment every night at bedtime. It may seem bizarre, but I now suspect I was doing this so that when I died in my sleep, things would look nice and tidy for the paramedics (or worse, my family) who ultimately discovered my corpse.

After that class, I asked the cardiac social worker why her excellent two-hour presentation about the psychosocial impact of heart disease on patients was the very last one of the 7-week series, instead of being the first (back when I really, really needed to hear it). She replied: “We wouldn’t want to scare people off.”

In hospital, today’s cardiac social worker is typically the member of the care team who can sit down with an overwhelmed, frightened hospital patient to ask the questions I wish I’d been asked before discharge, such as:

• Is there anybody at home who can help to care for you once you get home?
• Is there anybody at home you will need to take care of?
• Are you able to take enough time off from your job to recuperate?
• Will you be able to afford the expensive new heart medications you’ve just been told you need to take every day for the rest of your life?

But one of the most important roles of the cardiac social worker is simply to acknowledge the life-altering effects of this diagnosis on the patient. As Kate Jackson wrote in Social Work Today, chronic illness like heart disease invariably means experiencing many losses.(1)  

   “Patients often feel like they’re walking down a dividing line between the past and the future. Looking backward, they can see everything the diagnosis has taken away from them or has forced them to relinquish. Looking forward, they can’t see anything quite clearly. There’s no going back to the past, and the future can seem uncertain.”

These losses can be difficult to resolve – and often even permanent. Social workers call them infinite losses, says social worker and author Mila Tecala of the Center for Loss and Grief in Washington, DC.

Depending on the nature of the illness, these losses may include:

• comfort
• sexual function
• career
• income
• self-efficacy
• freedom
• cognitive function
• intimacy
• pride
• joy
• self-esteem
• self-control
• independence
• mental health
• hope
• dignity
• certainty

 But as Tecala reminds us, although these losses may be vast, the grief they arouse likely will go unrecognized or unaddressed – oversights that can have severe consequences to future health:

”      Because chronic illness can strip away many of the characteristics that form identity at the same time it causes disability and loss of livelihood, the totality of the losses is potentially enormous. Since these losses aren’t tied to one event but are multiple and repetitive, the ill person may live with perpetual grief, known as chronic sorrow or sadness.

“The most prominent component is fear: fear of pain, disability, recurrence or death.”

Most often in life, grief is a reaction to a single, time-limited event such as a death of a loved one. Jackson quotes Beth Kane, a New Jersey social worker who specializes in working with patients living with chronic illness:

   “Individuals often don’t seek support – either because they are unaware that help is available, or they don’t know how to approach anyone for help. There’s still stigma linked to participating in professional counseling or seeking support services. It’s not uncommon for patients to feel that they’re weak or crazy for needing emotional support.

“They think they’re the only ones who feel this way. And well-meaning friends, family or health care providers may compound the difficulty. Some, for example, may try to add a helpful perspective by saying things like:  ‘It could be worse!’ or ‘You look fine! – both statements that invalidate a person’s physical and emotional suffering.

“The notion of ‘it could be worse’ translated into ‘you could be dead’ is a big roadblock. There is a lot of material out there about positive thinking, which in its own right has its own merits and can be useful. But when statements like this are made or not made but used as a viewpoint, it is very dismissive of the pain the person experiencing this type of grief is trying to manage. 

“Telling a patient that things could be worse is not only unhelpful, but it also minimizes and dismisses the person’s right to have their feelings.”

Jackson adds that our health care providers, although certainly aware of the serious diagnosis, are often unable to spend the time required to address every issue of loss that may arise with each patient. And patients often aren’t even aware that grief is present.

Under these circumstances, there’s a grieving process “that most often eventually leads to resolution or closure along with the healing that provides the person the ability to experience the pain of loss differently and not as acutely,” Kane explains.

Strategies that medical social workers have found useful to help their patients deal with this grief include journaling and mindfulness-based therapy. Written worksheets can also focus on weekly goals of the patient’s choosing to help them regain some sense of control and mastery over their lives.

Kane cautions patients, their family members and other healthcare providers, however, not to set the bar too high:

     “Help individuals focus more on what they can do and at the same time to find new interest, new structures, and new routines. In the course of doing this, we can help provide them with new coping skills and outlets for their feelings.

“This does not mean we tell them how lucky they are or that things can be better, but rather that they are still valuable, they still have something to contribute, and can still be very active participants in their lives.”

♥

 Hug a social worker during World Social Work Month!

♥

(1) Kate Jackson, “Grieving Chronic Illness and Injury — Infinite Losses: Social Work Today. Vol. 14 No. 4 P. 18, 2014.

(2) Kay Davidson and Sylvia Clarke, editors, Social Work in Health Care: A Handbook for Practice (New York, Routledge, 1990)

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Q: Were you able to see a medical social worker before your hospital discharge?

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See also:

Study: 91% of patients are discharged without a written care plan

Why don’t patients take their meds as prescribed?

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

The simple new tool that predicts how well you’ll do after discharge

How we adapt after a heart attack may depend on what we believe this diagnosis means

“I’m not depressed!” – and other ways we deny the stigma of mental illness after a heart attack

Six personality coping patterns that influence how you handle heart disease

“Seeking Social Solace”: why aren’t heart patients online?

More about the important work that social workers do (via the Canadian Association of Social Workers)