Author’s note: The tree of life is a powerful symbol of protection and healing in many cultures and religions and is worn by many health care professionals. It symbolizes life, renewal, and energy, the connection of all forms of creation, and the cyclical nature of life and death.
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Here in my outpatient clinic, my primary focus is treating pain and returning clients to the highest quality of life possible. I treat pain and loss of function resulting from sports and traumatic injuries, chronic conditions, and also from illnesses. An interesting and very positive sign of the times is the dramatic increase in the number of clients coming in for outpatient treatment of pain and loss of function resulting from metastatic cancer.
Metastatic cancer refers to the stage of cancer in which a malignant tumor has progressed to the point where its cells have spread throughout the body. It is considered a terminal stage, although I have seen a few clients’ illnesses at this stage spontaneously, and miraculously, go into remission. A little background on cancer staging, which can be confusing: Staging is a method of describing the location and progression of cancer, including size of a tumor and where it is located, type of cells comprising the tumor, and whether or not it has spread to lymph nodes and other parts of the body. Staging is based on the results of diagnostics, including but not limited to scans, blood tests, and biopsies. Several different methods of staging can be used. Without going too much confusing detail, the TNM system is a widely used system that provides very specific information regarding a person’s illness. T describes the size and extent of the tumor. N refers to the number of lymph nodes involved. M indicates whether or not the tumor has metastasized, or spread to other parts of the body. A number after each letter provides a rating system to describe the degree of each factor, with the higher the number, the more severe that factor of the illness; so a rating of T1N0M0 describes cancer in which the tumor is localized to one location, would be not as advanced, and probably would have a better prognosis than a T4N3M1 rating, which would indicate metastasis.
Two other less specific and more widely recognized staging systems group cancer into categories that describe the progression: “In situ,” “regional,” “localized” and “distant,” or staging a cancer from stage 0, I, II, III or stage IV describe the extent to which cancer is present and has spread to other areas of the body. Distant cancer or stage IV indicates metastasis. So TNM1, distant or stage IV cancer all indicate a similar condition, where the cancer has migrated to the lymph nodes as well as other areas of the body.
Even just five years ago, metastatic cancer largely was viewed as a death sentence. Clients frequently would terminate treatment upon being downgraded to stage IV, assuming that there was no chance of improvement, and would make decisions regarding how to spend their last days. I’ve seen a shift in treatment and attitude in the past three years, as more and more people are living longer term with the illness and maintaining an excellent quality of life. Positive, amazing advances have been made in chemotherapy regimens with less severe side effects, personalized medicine, and clinical trials, and I marvel at the several clients in the practice who are currently receiving treatment. They are working, raising families, hiking, skiing, biking, working out at the gym, doing yoga, swimming, traveling—all with incredible strength and positivity, appreciating every day and the time they’ve got, which most of us can take for granted. They are monitored with blood work and scans at regular intervals; if their tumor markers increase, their chemo regimen is tweaked or changed, and they power on.
And the candor and sense of humor of my clients with this illness simultaneously moves me to tears and makes me laugh! Rock star mom client was lying on my table trying to mentally organize her day—“So I’ve got chemo, and I need to run some errands, oh I’ll just run to the mall after chemo.”
“Who the hell goes to the mall after chemo?? Go home and rest!” I told her.
“No! I’ve got stuff to do!” She snapped.
Another amazing dad client sent me into a fit of giggles regaling me with his week of trying to make a combined business trip and visit to Boston for treatment work around outfitting his very displeased teenage daughter with new skis and returning her old ones with which she was very unhappy.
So, why would anyone with metastatic cancer bother with PT, you ask? I can’t treat the cancer itself but I can treat the side effects of the disease and also of the cancer treatment. As a client said to me recently, “the cancer’s fine, I’m not having any pain from that, it’s the chemo that makes me feel like shit.” I am able to assist clients with swelling, musculoskeletal and nerve pain that can result from treatment, contracture and/or scarring resulting from radiation, as well as deconditioning, muscle weakness, and postural and alignment issues contributing to pain that may result just from being down for the count at times during their treatment and not up to their premorbid baseline level of function. I certainly cannot reverse the course of the disease but if I can help ease the side effects, and assist with some strengthening and conditioning, we may improve the client’s quality of life. Ultimately, it is possible that we may be able to help extend the patient’s life, by helping replenish physical and emotional strength reserves to allow him or her to fight the disease for longer.
As you may imagine, I get to know these clients well, but in a way that it is unique. It is in entirely a different capacity than that of a friend. I know everything about them—their current and past medical history, their treatments, their most personal side effects, and marriage and family issues that make life a little complicated and exciting at times; their fears, the frustrations that arise when their illness at times thwarts plans that they’ve made; their hurt feelings at how people they know react upon receiving news of their illness; and their concerns that their illness has on their loved ones. We chat and laugh about life during the sessions. But we don’t socialize, most of the time their family members do not know me and I don’t know them, and I will never ever cry or say “I’m sorry” to a client upon receiving bad news. It is not appropriate. It is absolutely, unequivocally inappropriate for a client to have to console a health care provider regarding the progression of their illness. They already have to console everyone else in their lives. No one should be forced to be that strong.
To say “I’m sorry” to a client who is suffering is effectively abandoning them, drawing a line that leaves them alone with their fear and their pain. Lots of people love to bitch about the Western medical system and prefer schools of medicine that are older and from countries that, let’s face it everyone, are sending their medical students to train in the U.S. Hey, I’m all for what works, and certainly believe that alternative methods can provide valuable supportive treatment and pain relief. I am Western trained and I believe it to be the best medical system in the world; therefore it is not a criticism but an observation from the inside when I say that our medical system traditionally has focused on life-prolonging measures, with more attention very recently being devoted to improving a client’s quality of life. For a health care provider to say “I’m sorry” to a client who has a serious, and probably eventually terminal illness, is in my mind effectively saying “You’re all but dead.” You don’t give up on a client with metastatic cancer. You walk the journey with them, providing whatever care that you can within your capacity as long as they need your help. If they’re still here in your clinic then they’re still alive, and you’ve got no business calling it.
Working with clients with serious illness, I do occasionally lose people in my life. It doesn’t happen nearly as frequently in outpatient as it did when I worked in long term care. I really am not trying to be flippant when I tell you that in that setting, I frequently lost up to 6 clients per month, and that it was different. These were people who almost always had lived long and full lives, and their quality of life was very rapidly declining. Death frequently came as a blessing. The long term care therapy structure around Medicare A also does not allow for much one-on-one time or extended therapy, which is a big problem with that system. So I would feel a pang of sadness when I would hear that a client had passed, and I attended a few funerals. I wish I could have known them and had the same rapport with them that I have with my outpatient clients.
Losing a client in outpatient leaves a hole in my life where the client used to be, even if you know that it’s coming. I have fond memories of them, just the way a relative or friend does. I remember their stories, the big purple sweater they always wore, a treatment that worked for them that I may try with someone else. But I am the physical therapist, and when they no longer have a need for PT, then my role in their life or their death is over. A relative or friend at best may remember that their loved one had a physical therapist whom he or she really liked and may stop by for a quick hello and hug or send a note. Most of the time, we are just part of the health care world that the family is desperate to forget, and we have to remember that the overall experience for them has been absolutely awful, an unending nightmare.
Well-intentioned family and friends who aren’t in health care lecture me that health care professionals need to distance themselves, and yes, we do. To not distance ourselves would be to carry more than we could possibly bear and adversely affect the care we give our other clients. In health care, we are used to short-term connections and clients coming and going, so I don’t see a health care professional’s grief over the passing of a client as a codependency. Rather, it is grief on behalf of our clients, from being on the inside and knowing how hard they fought for their lives, and from a kind of guilt and sadness that we were not able to save them. Even if it isn’t a possibility or within their scope of practice, the best health care professionals I know feel a level of passion for their work that amounts to wanting to save everyone who walks through their door.
I lost a client recently. He is not the first and most likely will not be the last Points North client who loses this fight, but he is the inspiration for this blog. I will remember him as a wonderful family man and friend to many in town; one of the strongest men I have known, physically and mentally strong; quiet, stoic, and possessing a dry, understated sense of humor that would leave me laughing to myself over his stories even days after a session. He loved his family, skiing, his old rugby friends, and the sport of rugby, which he no longer could play, but he stayed involved with his old team. I knew, looking into his dark eyes the last few times that I saw him, that he knew his health was declining and that he was afraid, but that he would never say the words, was too strong to worry anyone.
He celebrated a significant birthday recently. Mark and I were so happy to be invited to the party. He had lost a lot of weight in the past few months, but I looked at him at the party and he looked good. I knew that he was in pain and not feeling well but he pulled it together for everyone and was standing there in a corner, surrounded by friends, looking amused by the festivities and at the mob of people who showed up in his honor. Even given his condition, he passed very unexpectedly, literally hours after the last time I treated him. What I think is that his incredible strength most likely led everyone, including his doctors and including me, to underestimate how rapidly his illness had progressed recently.
My heart breaks for his wife and family. I know how close they all were and how much they will miss him. And I, too, will miss him. It’s hard right now to wrap my brain around the fact that I will never again see him come wandering through my yard to my clinic door, and I have not yet been able to bring myself to take him out of my schedule.
I saw him on a Saturday afternoon. He was taken by ambulance to the hospital Saturday night and died there. It’s a very small town and I heard the news Sunday afternoon, from a friend I ran into at the grocery store, who wasn’t aware that I knew him. I barely functioned the rest of the afternoon in a fog comprised of shock. I had just seen him 24 hours before. He had been strong enough to walk from home to my clinic and back in the company of a family member. He’d had plans for the next week. How was it possible that this had happened? Was there a clue, a symptom, something I had missed?
In our Western medical system, to not save someone is to fail—we have “lost” the patient, or a patient has “lost” the battle. We must temper our own hubris with the honor and responsibility of caring for the dying, which rightfully should bring us to our knees. Sometimes our job in health care during these moments, when our arsenal of knowledge and treatment techniques fail, is to be brave on behalf of our clients when we really are afraid, to be strong when we are weak, to be the eyes that will not look away from their gaze in their last days or hours.
Sunday night, I sat down at the computer once the kids were in bed to catch up on some documentation on the weekend clients. I opened my phone to review my schedule and up popped a photo that a friend of Mark’s had texted us—a photo of his beautiful two-month-old baby girl, wearing a little winter hat that we’d given her as a gift. The fog lifted as the beauty, unpredictability and circle of life hit me right between the eyes. Life is a gift, and we have no claim on time.
I put my head down on the desk and I sobbed.
–Kathleen Doehla, M.S. P.T.