This Wednesday: Tips from memoirs about illness.

Every Wednesday is Tip Day.
This Wednesday: Tips I gleaned from reading dozens of memoirs about illness.

Now I have a new appreciation for my good fortune in not having had much experience with hospitals—so far. As I was reading these memoirs--mostly about cancer--I made note of the bits of advice I read on how to cope with a serious illness. It seems a bit offensive, or at least overly simplistic, to sum up these profound experiences in a tips list, but the writers themselves seemed eager to try to help others learn from what they went through. So here goes:

 For long periods of suffering, take it day by day. Don’t anticipate.
 Being gregarious and upbeat wins you more attention from the staff. This isn’t fair, but it’s true.
 A lot of living goes on in the course of dying. Don’t postpone things—like seeing friends—until you’re “doing better.” You may never do better.
 If a friend is sick, show your concern. Don’t assume he or she will know, or will ask for your help. Caring silently from a distance looks like denial, or lack of concern, to the ill person.
 As a friend, don’t forget about caregivers, who not only help the ill, but also share the life they lead—and aren’t cut as much slack as the person who is sick. For example, they often keep working, while assuming a huge number of new responsibilities and worries.
 MANAGE PAIN!
 I wonder whether it would help or hurt you if you mentioned to the medical staff that you were writing a book about the experience.

Unfortunately, although these memoirs are packed with accounts of doctors, nurses, and others who were wonderful, they’re also crammed with stories about devastating problems and hideous frustration with doctors, nurses, and hospitals.

From this, I took the following lessons:
o You need to educate yourself as much as possible. Doctors don’t have the time or the emotional energy to explain all the possibilities to patients and their families.
o Write everything down. It’s hard to take in information the first time you hear it. And keep thorough records for insurance purposes, too.
o Every additional course of action carries pitfalls: side effects, pain, the difficulty of recovery from surgery, subsequent infections, time in the hospital, the real possibility of medical mistakes. So resist the impulse to “do everything.”
o Double-check everything you can. When my father was in the hospital, his doctor told him not to drink anything, then a nurse urged him to take a pill with water—which would have been disastrous, if he’d done it. A friend who went through chemo had a special notebook where she wrote down her prescriptions, and checked her notes against the chemo bags before she allowed each treatment to proceed.
o Before following a course of treatment, press as hard as you can—is this procedure absolutely necessary (e.g., do you really have to have that enema)? How painful will it be? How invasive is it? What other options exist, and are any of them less invasive, painful, etc? What will happen if the procedure isn’t done? Arthur Frank refused to sign a consent form when his doctor didn’t explain an operation to his satisfaction—and then ended up not having it at all.
o Note that the medical staff often minimizes the discomfort and difficulty of treatments. Perhaps this arises from a desire not to be discouraging, but the effect is often to make it difficult to plan (will it really be possible to go back to work within a few days?) or to make patients feel that they’re complaining unreasonably.
o Stay with the patient as much as possible. I don’t know what the visiting rules are in hospitals, but having read these books, I don’t think I’d leave a patient alone there, ever, if I could help it.
o Insist on understanding the true prognosis. In several accounts I’ve read, people reflect sadly that they didn’t really understand that the patient was going to die. And so they made choices they regretted—for instance, resisting using methadone, despite its effectiveness in fighting pain, because of its addictive properties. A ridiculous concern to someone who will die in three months! Terrible news is hard to hear, and it’s hard to give, so if you want to know, you need to push. Stan Mack recalls that Janet’s doctors’ talk was “ambiguous.” He recalled a doctor saying, “You don’t have a curable cancer anymore, but with medication there is a subset of women who…” They didn't understand what they were being told.

Comments

[Autumn]

I think it's good your summing these things up somewhere people can access them who might not normally learn these things. :)

As for telling the staff you're writing a book. I've met some interesting reactions - mostly supportive and understanding. I think too - it makes the doctors double check things. Just in case, because I plan to tell the whole world.

[Gretchen Rubin]

Yes, I wondered if it would make people take just a bit more care if they thought their actions were being recorded. Knowing that someone is planning to tell the whole world changes things.

[Vera Bass]

What a great blog you've built, and your writing is a pleasure to read. I found my way here via a link on John Lam's blog which is at iunknown (dot) com.

I've spent many chunks of the last 25 years in and out of hospitals and doctors offices, a few consecutive years using a wheelchair, and 6 months as the primary helper to a friend who died of brain cancer. Your list is great, and I could add lots of things, but will limit myself to 2, one serious and one lighterhearted.

1. If you care about someone who is fatally ill, read at least one of psychiatrist Elisabeth Kubler Ross's books. The best known one is On Death & Dying. The one on spiritual care is pretty darn good, too.

2. If you find yourself doing pushing-the-wheelchair-duty for a friend or loved one, and want them to wait a minute while you run over to check something out quickly, please don't park them facing a wall! It sounds and is funny, but for some strange reason almost everyone does that. :)

Vera

[Emily]

As a registered nurse as well as a survivor of a painful debilitating illness (from diagnosis to a last-ditch surgical cure it totaled 13 years while raising 3 young children) I would include these tips: ALWAYS have someone stay with you in the hospital so they can "stay" on the staff about pain management; it is advisable to take an advocate (in my case my awesome husband) with you when going for a procedure or even just an office visit who can ask questions you might not think of or be in any shape to remember, and never be afraid to take as much pain med as the doctor prescribes in fear of becoming addicted. My angel of a doctor told me to take the pain meds and that if I became addicted we would cross that bridge when we came to it. Thankfully I did not become addicted because I took many many pain meds for an extended period of time.

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Your lists seem quite accurate. My mother has terminal cancer and has done quite a lot for herself (probably prolonging her life) by taking an upbeat approach and doing such things as researching treatments, getting second opinions (and third), keeping lists of her meds and checking new ones. This is excellent advice for those who are unsure of how to handle things.

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