Dear Doctor

Posted by on Sep 1, 2015 in End of Life, Family & Disease | 8 comments

Dear Doctor

 

Attached please find the medical records of Mr. Ron C., who is transferring medical care to your office. Ron is a 63-year-old gentleman with recurrent lung cancer, which has spread to his opposite lung and bones. There are multiple treatment choices for his disease, which we have discussed in detail. However, Ron is leaving my care, because he does not trust me.

As you are well aware, metastatic lung cancer is usually incurable. However, it may still be appropriate to treat this disease. In many patients surgery, chemotherapy, radiation, or a combination of these treatments, can relieve suffering, increase performance and extend life. I discussed each with Ron. He was upset to learn that the treatment is palliative, by which I mean it will not cure, but he is motivated to begin therapy.

However, I made a mistake in our relationship. Ron has not forgiven me.

Every patient should be made aware of all reasonable treatments. Therefore, I try to explain multiple options. I believe, especially when a patient has an incurable disease, that one of the options is to do nothing; no chemo or radiation or surgeon’s knife. Just control symptoms, like pain, and live life, whatever remains. Do not try to treat the illness at all.

Why is “doing nothing” a choice? First, cancer treatments have serious side effects and can make life miserable. In addition, even if the patient tolerates therapy well, it takes away precious time. For some people drugs and doctors are not worth the marginal gain from toxic treatment. We also must not forget that cancer treatment can be very expensive and that one third of American families will spend their last dollar on healthcare.

In the end, it is not my decision; it is up to each patient and family. Too many times patients are dragged away to receive therapy after therapy, until they are wasted, decrepit and dead.

Therefore, I believe that every patient needs to hear the words, “you do not have to do anything. There is no law or rule requiring you to undergo aggressive therapy.”

This is where I screwed up, and Ron went his separate way. Ron heard those words and said, to himself, “Dr. Salwitz is giving up on me.” In that second, Ron’s trust in me to stand by him, to fight for him, to be a doctor with his best interest in mind, was gone.

I tried to explain that by giving him every choice, I was supporting him and guaranteeing that not matter what he decided, I would be there for him.   I told him that what was most important was that he live on his own terms and that he do whatever was right, just for him. However, while I tried to say, “You have a choice,” Ron heard, “you are done.”

Please take good care of Ron. He is a warm, wonderful man and deserves the best care. The path he must walk is hard; may it be guided by his desire and your wisdom.   I am sorry to have caused him even a small amount of sadness and pain. He deserves better.

 

Sincerely yours,

James C. Salwitz, MD

 

8 Comments

  1. You are, kind, caring, warm and a very special doctor. I am sorry for both you and your patient. He is dying and must cope in whatever way he can. It is important to hear all the choices but oh so difficult. It sucks to have cancer and to have your life taken away from you piece by piece. To be an oncologist and to truly care takes a toll on your heart. Take good care of yourself so you can continue to care deeply about your patients.

  2. I applaud you for being willing to give patients the choice to do nothing. After nearly 30 years in hospice, I have seen many patients end up “wasted, decrepit and dead” because of all the treatments they endured. As you point out, they lost precious quality time with their loved ones and suffered physically, emotionally and financially. Thank you for your dedication to your patients and for being willing to have those hard conversations with them. I wish that more physicians would follow your lead! Take care.

  3. The psychological side of cancer, as a patient, can be so difficult to deal with and It takes time to come to terms with a “no cure” diagnosis… With my 3rd major cancer , diagnosis, one of the no cure ones, it took me around 18 months to get a grip on that; to wrap my brain around that. I wanted aggressive treatment because somehow I hoped, against hope, I’d be one of the very few lucky ones who’d defy the odds. Had someone suggested to me to do nothing or to do little at that time I would have fired them too. It would have had nothing to do with the oncologist, it would have had everything to do with me and where I was with accepting this cancer (Of course I can make that comment in retrospect- at the time I would not have seen it that way because I was not ready). I wasn’t ready to deal with reality.

    When reality sucks it can take time, some times a lot of time, to wrap your brain around that. In my opinion sometimes treating the psychological aspect of cancer trumps treating the medical. Yeah it may mean over treatment for the cancer – but that may not be over treatment of the fear or other psychological components of this disease… Yeah it may mean a worse quality of physical life, but sometimes that is what is needed to get to where you can accept a change in focus and accept that nothing you do is going to change the outcome.

    Yes I have read the research that a huge % of patients don’t understand that palliative care is not curative care when they are stage 4… and that is a problem that it needs dealt with without making someone feel hopeless even if the course of their disease is hopeless. But doing little or nothing isn’t a choice that everyone wants to make even if at some level they understand that it won’t change the outcome. Pushing palliative care on someone not ready for that is, in my opinion, just as disrespectful as pushing curative intent care on either someone who isn’t going to be cured or have their life extended by much or on someone unwilling to go down that curative intent road any longer either.

    Honoring what a patient needs to do matters even if it does not make much medical sense (eg rejecting palliative for curative care in someone stage 4). And in some cases it is also honoring what they feel they need to do for their family (eg “keep fighting”). And doing what they feel they need to do for their family is just as important with respect to how they want to die and be remembered by their family. It also can give someone a sense of purpose in the midst of dispair. And this choice can also give someone a feeling of peace too, even if physically they are more miserable. In any case IT IS HONORING HOW THEY ARE CHOOSING TO DIE. Even if their choice means fighting it every inch of the way, going kicking and screaming into the casket. And isn’t that what oncologists should be doing even if they disagree with the choice?

    I watched two aunts, along with my sister’s mother in law (who lived with them), die of ovarian cancer. They took three approaches to how they were going to die. One had chemo up to the very end. One decided to stop chemo in the middle of her first relapse (started out with stage 3) and died 4 months later. A third refused treatment at her third relapse and chose to also stop eating and die that way. What I also saw was that acceptance of the implications of their diagnosis affected their choices. I had a long conversation with my aunt who stopped treatment in the middle of her first relapse. She was at peace with her life, knew she was going to likely die of this, but most importantly, had come to terms with dying. My sister’s mother in law had not come to terms with dying “passively” (in her point of view this is how she saw doing little or nothing) and no amount of discussion got her to that point. That is just who she was. So my sister dragged her to chemo, including 3 days before she died while all along thinking this was a stupid choice wrecking her quality of life. My other aunt had long considered assisted suicide as a way to die if the circumstances warranted it, even before she had her cancer diagnosis. She had been through chemo twice, didn’t want to do a third round, had accomplished the things she decided she wanted to do before she died (put together a family genealogy, make memories with her kids and grandkids, etc.) and so had fewer loose ends tying her to life. While she had bought a gun (a life long gun hater) ‘just in case’, she chose a more passive way to die which was to pretty much stop eating. Took her about 3 months to die that way.

    I am not sure how one can handle making sure that a terminal patient will understand that chemo won’t cure them, if they are resisting that understanding, without also alienating them. What I do know is that shifting focus to what they feel need to do, treatment wise, to meet their psychological needs matters even if it makes little medical sense and is not a choice you would make for yourself.

    With 20/20 hindsight and psychologically being in a different place now than I was then, I would make a slightly different choice for my first round of treatment than i made back then. I would have skipped wanting what we ended up not doing due to bone marrow damage. I would have skipped the panic and anxiety that my treatment was cut short 2 rounds due to liver and bone marrow damage and that I couldn’t do consolidation treatment because of that and a late chemo side effect. Because now I see it didn’t really matter in the long run which choice I made and I have a better grip on that now than I did then. But I COULD NOT do that back then. I wasn’t ready. I NEEDED to have my fear and denial treated with chemo too, not just my cancer.

  4. Thank you, Doctor for opening this up. All we can learn from another patient helps us build decisions we may make even far down the road.

  5. We can only try to make our information and our intentions clear. People bring themselves and their entire history to every discussion, and that history affects what they hear and take away. And it does you credit that you seriously discuss the option of doing nothing.

    After she chose to do nothing but palliative care for her lung cancer, our aunt had quite a few good years. She traveled, hosted visitors, took her granddaughter shopping and watched wildlife on her patch of prairie before she entered hospice and died.

    A wonderful neighbor with metastatic pancreatic cancer ceded to the pleas of her children: “We need you!” You have to be at Billie’s wedding!” “I want my baby to know you!” She dearly loved her children and grandchildren, and so endured several painful, miserable years of chemo with such severe nausea that she was robbed of the small delights of favorite foods and her cup of coffee. Now her children deeply regret the role they played in prolonging her suffering.

  6. Dr. Salwitz, thank you so much for this lovely, compassionate letter. I feel certain that your colleague will hear how much you care – and cared – about ‘Ron’ and his situation in the words that you wrote.

    As a temporarily able-bodied, temporarily healthy person of advanced age, I am so grateful for the example you set for other physicians around honesty, trust, compassion, and reasonable treatment options.

    Wishing you plenty of love, light and laughter in all you do

  7. Another great article. Stage 4 lung cancer in particular is a disease with very grim stats. There are other stage 4 cancers that you do have a chance of living perhaps even years with chronic treatment. This is NOT one of them. I think it’s important patients understand this – they may think of the other cancers with better stats and assume the same for themselves.

    Small.cell stage 4 lung cancer has an average survival of only a few months from diagnosis. Months. Some studies show 60 days. Those are months I would not want to spend sick and sitting in a chemo chair. The chemo to treat it is also more harsh than others.

  8. Wonderful letter… I suspect you’ve read the WSJ article re. “Why Doctors Die Differently,” but here is a link in case you have not.

    http://www.wsj.com/articles/SB10001424052970203918304577243321242833962

Leave a Reply