I have been thinking about retirement a lot lately (no, not my own!) While retirement may be mentioned in terms of the economic crisis or in blissful advertising of various products, I have been wondering about how palliative care patients face the issues of retirement and how retirement is viewed in the context of serious chronic illness.
I was slightly saddened but not surprised by the recent announcement that my friend and colleague David Oliver, PhD would be retiring. Perhaps you saw his story on CBS This Morning with Charlie Rose or at Christian Sinclair’s Plenary Session at this year’s AAHPM. I also learned that he and his wife, Debra Parker Oliver (a nationally known researcher in hospice care!), have been invited to address a plenary session at the 2013 AAHPM. If you don’t already know about David, please take some time to look at his blog (David’s Video Blog) about coping with cancer and his experience facing terminal illness, titled. It has received over 44,000 hits-to-date and from 74 different countries. I asked him to share some thoughts as a sociologist, a gerontologist, and as a patient facing a life-limiting illness.
Paul: How is planning for retirement different when you are a palliative care patient?
David: It makes all the difference in the world. In my case, PET Scans (now every three months – my second “3-monther” will be September 4th) give me some idea of how much time I have left. Of course I am hoping for a “clear” (negative) picture; for me that would simply mean that the cancer has not reappeared yet. Thus I waiver back and forth on when to “retire.” Unlike people with a terminal cancer diagnosis who withdraw and disengage from work, friends, and colleagues; or who decide to fight it to the end with every tool and magic procedure known to man; I have chosen to focus on living (teaching about the disease and my experience of dying with it) rather than on dying. I view the other two approaches as a waste of time and energy.
Last month, due to an acute episode of several small pulmonary embolisms that put me in the hospital, my retirement plan changed. Prior to the scare, I was going to wait until the cancer reappeared, and then retire. The PE’s moved up the date; I will officially retire September 28th.
I might add that if the cancer shows up on the Scan September 4th, the question becomes, will I move up the retirement date from the 28th to immediately, or stay the course until the end of the month?
If I have a “positive” scan in early September, I have decided beyond any reasonable doubt, not to go for a second round of chemotherapy. I will switch full-time to palliative care and hope that my palliative care, and eventual hospice team, will manage my pain. Regardless of the soon-to-be-learned PET Scan results, and the belief that my current pain free condition will continue for at least a month (my cancer metastasized to the bone, Stage 4), I will continue working, keeping the September 28th retirement date; as a “lame duck” I doubt if I will do much work anyway, and what a good time to say good-bye to all my dear friends and colleagues.
Sorry about the long answer to your question Paul, but these matters are not simple ones. In some cases the loss of daily contact with special friends at work can be worse than dying; better to hold on to them as long as possible. I am one of those lucky guys who for years have looked forward to going to work each day.
Paul: Were your doctors or health care providers involved in helping you decide when it was time to retire?
David: My primary care physician, who happens to be my boss and best friend as well (how about that for a relationship), left it up to me from the very beginning. He even avoided discussing the pros and cons of the option to retire early; he put it back on me every time I would bring up the subject. It has been my decision and mine alone.
My primary oncologist, like my PCP, is an excellent physician. Both combine clinical skills and compassion that exceed all expectations. If anything, my oncologist has encouraged me to keep teaching, to keep producing videos and to keep making public appearances. I think both these guys like me and will most likely, at the end, experience some bereavement. I can’t think of a worse job than to work so hard to save someone’s life only to fail the majority of the time.
Again, sorry for the long answer, the short one is “no.”
Paul: When faced with serious illness should your health care team bring up retirement planning? If so, how would you suggest broaching the issue?
David: I feel that the health care team, especially the players in the drama at the beginning, around the time of the diagnosis, should ask their patients about their preferences for a lot of things, including retirement.
Questions about preferences could be broached this way: “This must be difficult for you, there are going to be a lot of decisions to be made along this journey that we will be making together, some of them that you should start thinking about, and we can discuss soon, might include:
- ‘What are some of your ‘hopes’ before you die?’
- ‘What kind of quality living do you want from this point forward?’
- ‘Which course do you prefer, palliative care or (in the case of cancer) chemotherapy or radiation?’
- ‘If you chose treatment, what worries and questions do you have?’
- ‘Have you thought about work? Do you want, or can you afford, to retire?’
- ‘What are some of the things on your bucket list?’
- ‘Who is going to be your primary caregiver? We should include her/him in all our discussions.’
- 'We should discuss these and related issues before we put together our plan of care. Here is a list of questions to consider, let’s make an appointment when we can discuss them – you can bring some notes with you.'”
Paul: What support do you envision needing to help you transition to retirement? How can a palliative care team help?
David: I need assurances of what the end will be like, and long it might be, and how the time leading up to it is likely to unfold (at least the best guesses for answers to these questions). This will help me decide how to proceed. If time is really short, like less than three months, I will retire immediately, if I have more like 6 months (which, by the way, is my guess), I will put together one hell of a six-month exit strategy and implement soon after September 28th.
Paul: What advice do you have for people who are working when they suddenly get a terminal diagnosis?
David: Wow, good question. In my case, as I think back to October when the surgeon said, “David, you have Nasopharyngeal Carcinoma with widespread metastasis to the lymph nodes and bone, Stage 4,” my knees got weak, similar to losing a huge sum on a casino bet; or winning a huge sum. It was staggering.
The first question you ask yourself is, “What do I say, how do I tell people about this?” Ironically, the thought of dying doesn’t come until later; at least that was the case with me. And what do you say? I decided, since I was so aware of how uncomfortable this can be for persons who approach someone with cancer, and they know you have it, but they don’t know if you know they know you have cancer, conversations can become very awkward; and may not happen at all. Thus I realized I had to make people comfortable; I produced a video for the Department of Family and Community Medicine (in which I have an academic appointment) to tell them, with humor, about the diagnosis. I assured them I was the same ‘ole “David,” and to drop by for my usual teasing, and that hugs would be OK too. If you go to “David’s Video Blog” and click on “old posts,” you will see that first video that I recorded for my fellow faculty members. That particular video has over 9,000 hits-to-date; I did not intend for it to be “inspirational,” but everyone saw it that way. And fortunately, they have treated me the same and continue to drop by for teasing and hugs. It was a good decision to go public, be open about what I was facing. If there ever was a teachable moment, this is it, and I have been taking advantage of it.
I suppose “going public” isn’t for everyone, but my advice is to give serious consideration to it. The alternative as I suggested earlier is to withdraw, disengage. Or worse in my opinion, to go to battle; fight it at all costs! It was my 92-year old mentor, confidant, and philosopher friend who said to me, “David, don’t panic, don’t fight it, relax, and accept it. It is what it is.” And he is right. None of us get out of this alive; as you (Paul) have taught me, that fact holds true 100% of the time. It is a universal law! (Wow, with this observation, the social sciences have finally achieved scientific status.) Do I like it, no; but I am going to die, yes, and so are you. It is time we take the strangeness out of death; Michel de Montaigne argued that centuries ago but we still lag far behind. Each day it is becoming less strange to me, and focusing on living rather than dying, has helped me tremendously.
I was so preoccupied with doctor’s appointments, blood draws, and eventually chemotherapy, I never thought about retirement, and this in spite of missing a good bit of work. I was lucky in that I had a job and a boss who understood; and I was confident that I would not lose my job over this. I think I am in the minority; most people either keep on working because they cannot afford to retire or worse, they are forced into it because of the side effects of treatment. These issues alone are sufficient to alert a palliative care team to include this discussion in their toolkit.
Paul: Finally, what do you think of the word “retirement” for “retirement?”
David: I hate it, it tells you nothing. I prefer the word “redirection.” Unfortunately, in the United States and in most Western cultures, and increasingly all over the world, you are who you are based on what you do and what you produce. It’s your occupation that pegs your identity. That’s why in causal conversation we quickly get to the question, “What do you do?” If we know what they do, we know who they are, and the rest of conversation becomes predictable. I once asked that question of a stranger, and he hesitatingly, with difficulty, finally said, “I’m retired.” Geez, I thought, he has told me nothing; and then I said the worse thing I possibly could have said, “What did you used to do?” Hear it, “Who were you when you were somebody!”
So “redirection” is much better. I’m writing a book about my cancer journey, even after September 28th I will continue to give speeches, volunteer to teach a class here or there, and continue to bleed Black and Gold for my Missouri Tigers. So if someone asks me what I do, I will reply, “I’m a writer and teacher who loves Mizzou sports.” That should produce an interesting conversation. I will have redirected my life, not retired it.
Although wanting sometimes to watch people squirm, I don’t say, “I have cancer and I’m dying.” Oh my God, think of the reverberations to that one. But being a sociologist and gerontologist, I could certainly have fun with it. Social behavior is so interesting and I’ve learned that you can take all kinds of liberty when you are old, and especially when you are dying. So there are perks to this process.
Paul: I love the idea of Redirection! And David thanks so much for your wisdom and friendship throughout your journey. I wanted to share one last thought. The word in Spanish which is often cited in translation is an apparent cognate: Retirarse. Retirarse comes from the latin “to withdraw." In contrast, in Spain, the word for retirement is Jubilarse - which shares a key word root with Jubilation. Apparently the word origin stems from Moses’s creation of a Jubilee year which would occur after 7x7 years (49 years). During the Jubilee year debt/servitude were forgiven.
I love the idea that for our patients facing retirement due to serious illness, we can somehow transform the experience from withdrawal to one of jubilation. David, I wish you much jubilation in your retirement!.
by: Paul Tatum and David Oliver