Grand Rounds: I am delighted this week's host, Paul Levy, chose my post

I am delighted to have had my blog post on The Hope Pyramid chosen for this week's Grand Rounds, hosted by one of my favorite bloggers, Paul Levy, CEO of Beth Israel Deaconess Medical Center. Paul writes with humor, curiosity, intelligence, integrity, and respect about hospitals and health care, along with other areas that catch his interest.

Grand Rounds is the virtual version of medical grand rounds. "Grand Rounds is the the weekly rotating carnival of the best of the medical blogosphere." Each week a host blog picks a theme and health care bloggers submit postings. On Tuesday, the host posts the blogs he/she has selected.

Medical Error : The Human Dimension (article in New England Journal of Medicine)

The October 25 issue of New England Journal of Medicine had an intriguing article entitled “Guilty, Afraid, and Alone — Struggling with Medical Error.” This article was also covered by the New York Times. It focuses on the need to address the emotional repercussions of medical error, not just correct error rates. It’s not surprising that doctors who make treatment errors feel guilty, may fear a law suit, and therefore tend to do the exact opposite of what the patient and family need – they avoid the person and their own accountability and abandon the family when it is most in need of attention.

Families, including partners of the patient tend to feel equally guilty or even guiltier – for not keeping close enough watch on the patient. They also fear further harm from medical staff if they ask questions about mistakes.

Silence begets silence and breeds mistrust. And once mistrust enters into the family/medical system relationship, remediation and reconciliation move farther and farther away.

The article says that apology and disclosure are necessary but may be insufficient. It concludes with: “Perhaps most important, building bridges to injured patients necessitates including them and other patients in the development of solutions.”

I wonder if medical professionals know how very hard it is for patients to challenge them on any point. When was the last time you said, “No!” to your doctor? I was only able to reject a surprise spinal tap because Richard was in the room with me and saw my ambivalence and suggested we postpone. A friend, who is a medical journalist, could barely fend off a posse of young neurologists who wanted to insert wires into her heart to shoot it with electrical current to clear possible clogs. Her husband blocked and tackled for her too.

Yes doctors who make mistakes need to ‘fess up and apologize. But I think patients and their partners can help each other enormously if they can stand side by side and ask tough questions and say, “No” or “Not now” or “Are you sure? Can you please check again?” or “Why do you think this will help? And what is the down-side?” or “What if we waited?” or “How many times have you done this procedure?”

Have you said, "No" to your doctor? What did it take to do that? And what happened?

An Unexpected Conversation in a Waiting Room: The Hope Pyramid

The second pain management clinic I went to, in June 2000, in one of the major Boston, Harvard-affiliated teaching hospitals, was overcrowded and dingy. The tired olive walls of the waiting area made the orange plastic chairs that circled the room all the more jarring. The thick haze of pain coming from the crowd of patients made it hard to breathe. Everywhere I tried to rest my eyes I saw clenched jaws and jiggling feet and silent tears. My chronic pain was at a high point, and I was at a low point in my search for relief. I stopped my own jiggling and clenching for a moment and noticed that the woman sitting next to me seemed unusually serene. Her hands were resting quietly in her lap and her eyes were focused on some invisible point beyond the agitation around her.

To both our surprise, I turned to her and said, “You seem to have a calmness that doesn’t come from overmedication. How do you do it?” To my surprise, she answered, “I always have hope.” She chuckled and added, “I also have chronic back pain and quite possibly a brain tumor.” I asked her to tell me where she finds her hope. I really wanted to know because I had yet again been disappointed by all the treatment options I could fathom to address my mysterious chronic pain condition and was dipping into the muck at the bottom of the depression barrel.

She said that there is always something to be hopeful about, no matter what condition you’re in. When you have health, you can be hopeful about having any of your dreams come true. Once your body fails you, you can rest your hope in your emotions. You can hope that you will still feel love and compassion for others, and for yourself. If your emotions become emptied, you still have your spirit, and you can hope to connect to something greater than yourself, something that has a light to shine on your shadows. And when the spirit is gone, then you have already become something else, and who knows what hopes await you there.

We had this conversation over seven years ago. Thanks to my husband, my dog, and western and alternative medicine, I am relatively pain-free. I never knew what happened to that woman in the waiting room, but I can still hear the assurance in her voice. And I have learned that there is always something to be hopeful about -- you just have to keep looking.

Chronic Illness and Emotions: What Couples Can Do to Connect

Part 6 (and the final part, for now) in the series on Relationship Roles and Illness.

Illness can be a demanding task-master. It can consume time, energy, patience, compassion, and even love. It can smash our early relationship dreams of a blissful hand-holding companionship - a happy couple smoothly tripping down the road of life, producing strong children and noble works along the way, and ending in a quiet sunset, supported by a steady retirement income stream.

One of the sadder casualties of illness is our image of our partner. A once charmed, handsome, generous, capable image gets supplanted by the gray profile of disease. Conversation that was once lively and expansive constricts to topics that can be researched on WebMD. The love that brought the couple together can be forgotten, supplanted by worry or detachment.

To reclaim each other, to resurrect or rebuild intimacy, I suggest couples do two things:

1. Be together in silence. When the turbulence of activity slows to stillness, and space is emptied of the words you hurl at your fears and resentments, you may be able to see that unique essence of your beloved that drew you together before illness did its damage. In silence, you may be able to reconnect with the spirit (some of you may call it the soul) that has not disappeared but may be waiting to be roused. Being together in silence may seem impossible. It isn't. And it doesn't have to be for hours, all at once. It can start with an uncomfortable ten minutes three times a week and build up over time.
2. Laugh together. Laughter is not only potentially good for one's health, but it disrupts the rhythm of complacency or anger or sadness. One day, when I was in the thick of my chronic pain condition and in no mood to connect much less laugh, I noticed about seven black socks draped all along the stairs that led to the bedroom. I asked Richard how they got there. He answered, "They're making a break for it....trying to reach the land of lost socks before they're caught." I cracked up. It felt so good. And it felt so good to look into Richard's eyes with lightness in my own, instead of the usual darkness.

For some couples, it's too late to reconnect. Illness has done too much damage; or the relationship was strained to begin with and illness only made things worse. The long haul of chronic illness can become unbearable. For couples in this situation, I would suggest bringing outside resources into the relationship. These can be friends, family, community, or hired help to clean, shop, cook, chauffeur, baby-sit, and take care of the daily care needs of the ill partner. These resources can also be in the form of activities each partner can engage in -- book groups, card games, classes, sports, etc. When your relationship has turned into a source of pain equal to or greater than the illness each partner needs something to uplift him/her and someone to talk to -- be it friends, family, or a therapist.

Chronic Illness: No One's Talking About it

From an October 11 article in the Atlanta Journal-Constitution:

Americans are more reluctant to discuss managing a chronic illness with family or friends than to talk about politics or religion or even extra-marital affairs, according to a survey of more than 1,000 adults conducted by Evercare, a provider of health plans for people who have chronic illnesses, are older, or have disabilities.

The survey, released Oct. 11, found that 82 percent of respondents said they knew someone with a chronic illness, but only 34 percent were likely to suggest ways for this person to better manage their care. And, btw, by 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.

The reasons why many Americans are reluctant to offer advice to chronically-ill friends or family include: They think the person has the situation under control (66 percent); they are not a health care professional (31 percent); they don't want to seem like a nag (31 percent) or rude (29 percent); they don't believe the person would listen to them (27 percent); or they didn't think the matter was that important (15 percent).

The bit that caught my attentions was this:

Twenty percent of respondents said their spouse was the easiest person to give advice to about health. However men have an easier time offering health advice to their spouse (28 percent) than women (19 percent).

This means that even among committed couples dealing with chronic illness, there's not a whole lot of talking happening about the topic. This deeply concerns me. Chronic illness consumes -- it can consume time, energy, passion, attention, empathy, altruism, and even love. And it's voracity can become even more potent when there's nothing between it and it's victim but empty silence. How lonely!

And any significant silence, any unnamed pain, or any undiscussable topic does not stay encapsulated in a neat corner of the relationship. It infiltrates. It seeps into other territories in the relationship, taking up more and more space until silence turns into habit. Not discussing a fearsome issue -- be it illness, sex, infidelity, money, family -- does not diminish its impact. On the contrary. The tension around the taboo subject just gets expressed elsewhere - through distance or eruptions.

Why aren't couples talking about the chronic illness in their lives? Is it denial about the illness? Is it protection of the partner's feelings? Is it avoidance of one's own feelings? Is it disgust over the physicality of some of the symptoms? Is it rage at the sick partner for his/her limitations, or at the well partner for his/her health? And why is it easier for men than for women to speak? Or is it harder for men to hear their female partner's words than it is for women to hear their male partner's?

Whatever the reasons, illness is just too hard to carry alone. Please, may we all find a way to find the words that penetrate the silence.

A Story About Lung Cancer

Please have a look at a short piece I wrote about "Saying Good-bye" to a dear friend who died from lung cancer. It has been published on a terrific website: But You don't Look Sick

Not all stories have a sweet ending, but all stories go on. Sometimes we just have to say good-bye.

A Story About Chronic Pain and Roles: Barbara & Richard

Part 5 in a 6 (maybe more) part series on Relationship Roles and Illness

I was housebound for a year, struggling each day to stay a few steps ahead of the pain and rarely succeeding. That was my daily work, my role, and I felt that I could not take on anything that interfered with my primary struggle. On better days, I tried to go for a short walk outside. That was my limit. In retrospect, it may have helped me to be distracted by vacuuming or doing dishes. The one thing I was compelled to do, and was very good at, was internet research on chronic pain and on western and alternative approaches and on finding specialists. I became a lay expert and used that expertise to drive my care. That also became my role.

I was dependent on Richard to deal with the world, and to keep the world away from me. That was his role. He is a master at this and was brilliant at negotiating with our insurance company and at searching out food I had some interest in eating. He felt joy when he was able to solve a problem that lifted my burden a bit, since he felt so helpless in terms of making my pain go away. I, in turn, expressed appreciation for his activities and insisted that he continue working at his job and find a therapist. I knew that he needed normal time – time way from illness, pain, and a crying wife. And I knew he needed his own specialist, a therapist he could share his fears and pains and anger with, because I could not hold his pain and my own.

We checked in with each other regularly about this arrangement. On my better days, I offered to go to Whole Foods or to pick up a DVD (in the days before Netflix). He asked me to let him know when it could work for him to visit his brother in San Francisco. I knew how much he wanted to make that trip, yet I was also afraid to be left alone. We problem solved together and arranged for the two friends I had let into my dark world to Barbara-sit while he was away.

Did our efforts to balance our roles go smoothly? Were we always in synch with each other’s needs? The answer is a big, fat, shrieking, “NO!” Illness is overwhelming, and without consciously remembering that your partner is on your side, the rage of illness can easily trump compassion. There were times I angrily sent Richard out of the room because I thought he just didn’t get what I was going through, and it was too frustrating to try to explain, again. There were times when Richard was fed up with my finding fault at his attempts to help and had to take a break from my despair. Ultimately, we found our way back to each other, because that is what we do.

Practical Advice: How Can Couples Deal with Life, Illness, and Emotions?

Part 4 in a 6 part series on Relationship Roles and Illness (originally a 4 part series, but I realized there's a lot more to write)

On the practical side the couple can set aside a time outside of the turbulence to rationally discuss what strengths each person can bring to deal with daily life and medical demands. Illness forces so many unwanted burdens on us, we tend to feel overwhelmed and that feeling can constrict our sense of our own capabilities – for both partners. Doing can remind us of our capabilities and help us feel more a part of life.

Together, both people can write out a list of what needs to be done. I suggest that the ill partner then go first and state what he/she feels able to do (knowing that this can change and may increase or decrease daily). Can he/she shop for groceries? No. Can he/she arrange for groceries to be delivered (there are services like Peapod or Netgrocer)? Can he/she drive the kids to soccer? No. Can he/she call someone to arrange for transportation? The idea is to find some way for the ill person to stay engaged in the world and hold on to adult responsibilities – while accommodating to the real constraints imposed by illness. This may seem burdensome. But the more the ill person gives away, the more he/she fades away, and the stronger his/her relationship becomes with the illness.

The well partner does not have to pick up whatever remains on the list. The well partner also needs to assess what his/her priorities and capabilities are. He/she may need to work over-time and may not have the time or energy for cleaning the house or helping the kids with homework. And the well partner’s capabilities can also change on a daily basis. (btw -- Craigslist is a wellspring of services and goods).

After the well partner decides what responsibilities he/she can undertake, there will be leftovers. Then both partners think together, constructively, not blamefully, about how they can get help from an outside source to pick up these remainders. Can they hire a cleaning service twice a month? Will their insurance pay for a home health aide to bathe and give medication to the ill partner? Can friends, neighbors, and family be enlisted to prepare meals, chauffeur kids, drive the ill partner to medical appointments?

The most important part of doing this kind of chore/responsibility inventory is not the thoroughness of the list, but rather is the spirit of mutual caring the couple can bring to the conversation. If this activity is done with acrimony, then the efforts each partner makes will carry the extra load of bitterness. If the preamble to this activity is: “We are both having a difficult time. Maybe we’re trying too hard. Let’s, together, figure out how we can be easy on ourselves and make it easier for each other. Because I care about you.” – then the efforts made will be lightened by compassion.

The Lighter Side of Chronic Illness: Dominoes??

I found another interesting website about chronic illness. But You Don't Look Sick is an online magazine about living life to the fullest with any disability, invisible disease, or chronic pain and hopes to provide answers to the endless questions of: "But you don't look sick?" It contains book reviews, personal essays, and tips about hobbies and activities that are easier to do for people with chronic illness.

Please check out my recent article in this magazine:
Dominoes: It's Not Just for Kids Anymore

Chronic Illness Statistics: We Are Not Alone

Here are some surprising stats about chronic illness I recently found on a very interesting website, The Daily Headache, about living with and managing migraines and chronic headaches (written by Kerrie Smyres):

• Nearly 1 in 2 Americans (133 million) has a chronic condition
• 96% of them live with an illness that is invisible. These people do not use a cane or any device and may look perfectly healthy.
• Sixty percent are between the ages of 18 and 64
• The divorce rate among the chronically ill is over 75%
• Depression is 15-20% higher for the chronically ill than for the average person
• Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and more than 50% of these suicidal patients were under 35 years of age

We are not alone. And we have a lot to learn from each other about living with illness. In fact, there is a National Invisible Chronic Illness Awareness week annually in September to bring together and educate people with chronic illness and the people who care about them.

Relationship Roles & Illness: Why Is It So Hard?

Part 3 in a 4 part series on Relationship Roles and Illness

Serious illness seeps into every refuge and rift in the terrain of an intimate relationship. It strains all daily routines and customary roles. The ordinary can no longer be taken for granted. Doctors, drugs, hospitals, and healers merge into the substance of the relationship. Unexpectedly, life and death choices become the focus of conversation instead of the wonderfully conventional “How was your day, dear?” or “What would you like for dinner?”

Underneath the enormity of this shift, some couples find that the relationship-building work they have done for years is there to support them. They can be partners in crisis just as they have been partners in life all along. Other couples find that the health crisis slices through the fragile ties that have held them together and that without the familiar routines to buoy them, they flail.

However, no matter how strong the relationship structure, illness creates new rents or widens existing cracks. Why is this? Because on some level illness makes us children again and then takes away the promise of “happily ever after.” Both partners are hurting and scared and want someone to make it better. Both are facing loss and abandonment and want someone to make it stop and to tell them that it will be all right. And that cannot happen. Even with physical recovery, the sundering caused by illness leaves its stains.

It is awful to look at the face of your sweetheart and see pain, fear, and helplessness when what you want so badly is to have it back the way it was. Some couples can find and hold each other with understanding and compassion. Some couples direct their rage against the seemingly omnipotent enemy, illness, against each other, and demand from each other the fortitude illness has taken away.

And all this turmoil is backdrop to the daily demands of dealing with a health system in crisis. Couples still have to deal with making appointments, finding specialists, researching new treatments, taking new medications. And the demands of ordinary, daily life don’t wait either. Children need new school clothes, groceries must be bought, and the office still expects you to do your job. Can you feel the pressure building?

How can couples deal with all three intersecting tensions -- daily life requirements, illness demands, and erupting emotional issues. One answer is they can't. Not alone. It takes a village to help a couple dealing with serious illness manage the daily tasks, the medical choices to be made, and the emotional upheavals. Neighbors, friends, and family (if you're lucky) can be enlisted to chauffeur the kids, do grocery shopping, rotate cooking dinners. A trusted companion can sit with the ill partner when the well partner needs a break. I, thankfully had my beloved friend, Tom, "Barbara-sit" when Richard needed to see the opening of the first Lord of the Rings movie. And I have participated in cooking brigades when an ill friend and her partner were too exhausted to prepare anything more demanding than cheese and crackers.


In the next installment on the topic of Roles and Illness, I will offer some more suggestions of things the couple can do themselves to help each other cope.