She stepped over the threshold of their home, a visitor. Through the doorway the hospital bed was visible and the hiss of the oxygen tank audible. She heard the patient’s voice speaking in his native tongue, French. His son whispered in her ear that he was talking to family abroad. She stepped into the room and put her bag and coat on a nearby chair. He waved to her, finished his call and gestured for her to come closer. She took his hand in both of hers and squeezed. He thanked her for coming.
The hour passed quickly. She learned that his wife, having been always very demure and quiet in the office, was quite the spitfire at home. His wife chastised him for wanting an ounce of red wine when he was barely eating any food. Though he was hungry at times, he could only eat a few mouthfuls before the nausea set in, this despite being on the appropriate medication to aid in controlling his nausea. She explained that slowly his need for food would diminish and that would be okay. So long as he could enjoy sipping on water, juice, or wine, that would likely be enough. She learned that he enjoyed doing puzzles.
At one moment, he looked her in the eye and asked if she could help him go. Tears welled up in his eyes. Then in the next breath he said he wasn’t ready. She reassured him that these emotions were normal. There would come a time when he would become less aware of what was happening and so she reminded him to say the things that needed to be said now while he still had the chance.
She forgot about the tea that had been offered and accepted. He told her to drink it before it got cold. He asked for water, then said he was tired and wanted to rest.
She said goodbye and squeezed his hand again. She said she’d like to visit again soon. He said he’d like that.
Yesterday, a news story came up on my FB feed. I’m still thinking about it and trying to figure out how I feel about it. I decided to write about it, hoping it might help me process my thoughts. It’s about a 29-year-old woman with stage 4 brain cancer (glioblastoma, the same kind of tumor that Dr. Greene (Anthony Edwards) on ER had) and she is going to die on November 1. She lives in the U.S., in a state where, apparently, there are laws in place that allow patients to take their own life when terminally ill. She states she’s not committing suicide, rather, she is taking control of her illness and deciding when and how she will succumb to it, not the other way around. Most of the comments posted after the article are all like, “Wow, what a brave woman”, “Good for her”, “I’d do the same”.
Really? I was kind of surprised that no one seemed to question the ethics here.
I can’t even begin to imagine what this woman is going through. To be diagnosed at such a young age with terminal cancer, it’s truly heartbreaking and tragic. One of my colleagues said she’d probably do the same if she were in that situation. I’m really not sure I would, to be honest. Or maybe I would? How can one ever know until faced with the reality?
I have three children. This young woman has none. Would her decision change if she had kids? How would you explain to your children that you are going to end your own life before the cancer gets a chance to?
Death is a natural part of life – granted, dying at 29 doesn’t seem all that natural. Dying at 90 on the other hand, does. Still, we are all going to die, none of us can ever know when or how, that is, unless we are diagnosed with a terminal illness and even then, no one really knows how long we have. Last spring, I visited a patient dying of prostate cancer. I saw him about 12 hours before he passed, peacefully, at home, surrounded by his family. When I spoke to his wife the following morning, she struggled with the fact that she was asleep when he died. I wondered if it would have been easier for her to witness his death? I’m sure it would have been difficult regardless. To the very end, my patient hoped and prayed for a miracle. It was never stated, but you could see it in his eyes. He didn’t want to die; he didn’t want to leave his wife and children. He should have had more time. He kept fighting to the very end. I admired him for that.
I have a hard time knowing that this young woman is going to actively end her life. That she picked the day she was going to do it, much like one picks a wedding day. It’s two days after her husband’s birthday. She has been told there is no cure, that her final days will be spent in pain, perhaps with multiple seizures and it’s not something she wants her family to witness. I understand that, I really do, but there are ways of helping dying patients be more comfortable in the final stages of life. It’s the whole reason Palliative care exists. The process of dying has to remain a natural part of life, once we start helping patients to die, we no longer adhere to the Hippocratic Oath, in my opinion.
First, do no harm. A physician, in good conscience, cannot be a party to the death of another human being. I can already hear those on the other side of the argument – NOT assisting a patient to “die with dignity”, causes harm. I don’t believe it does and I don’t think this is what Hippocrates had in mind when he wrote the Oath. I don’t wish for any individual to suffer on their deathbed, far from it. Medicine has come a long way in the past 150 years – expected death can be painless for the vast majority of patients. I think we are actually inviting more harm to patients, their family, and society as a whole if we decide that assisted suicide, euthanasia, dying with dignity – whatever you want to call it – is okay.
It’s just not.
In the next few days, a family is going to lose a parent, a sibling, a friend, a partner, a lover. This is a family who has come together at the end, in grief and in love.
I witnessed a small piece of this today.
With a heavy heart I knocked softly at the front door, taking note of the “No Smoking, Oxygen in Use” sign.
Upon entrance into the home, the sound of the oxygen tank was heavy in the air. A hospital bed could be seen down the hallway in the living room, and lying in it, my patient. I forgot how one looks during the final hours of life. It caught me by surprise and a lump formed in my throat. I approached the bed and touched my patient’s hand. I said hello, as the personal support worker washed my patient’s feet. I am not religious but was instantly reminded of Mary Magdalene washing the feet of Jesus as he hung on the cross dying. The living room was transformed into a makeshift hospital room. Bedpans, sheets, syringes, bottles of medications, all visible on the bookshelf and lined up meticulously, within easy reach. But this was someone’s home – unopened mail on the coffee table, hospital brochures on dying at home scattered underneath. Half-read books on the couch, an afghan and pillow rested in the corner.
Surreal doesn’t even begin to describe it. The family and I talked, mostly about their loved one and the events of the past few weeks, but also about their plans after the funeral; the trip they will take this summer, to scatter the ashes; the arrangements for the funeral.
I walked for a while after the visit. Trying to clear my head. Trying to imagine what that family is going through, watching their loved one dying in front of them. I wished, for just a moment, that I was religious. Maybe believing in God would help me understand this process of death, what it means and what it leaves behind.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
It’s been a difficult day.
One patient whose wife has terminal lung cancer came to see me today. I plan on doing a home visit later in the week. He came for his own medical issues, but we talked about his wife. He put on a brave face but he is devastated. Married for 36 years, second marriage for both, this wasn’t supposed to happen to them.
Another patient, in a long-term relationship, just isn’t “feeling” it with her partner anymore. She hasn’t for a long time, yet remains in the relationship and complains regularly of episodic pain which has been investigated more times than I can count. Her tests always come back normal. She left her partner last year for a time, actually started dating someone new but then returned to the long-term relationship. It would appear that the break really didn’t do much for her. She still doesn’t know what she wants, yet isn’t ready to take the final steps.
Both of these people have to let go, in different ways.
At some point in all of our lives, we have to let go of something, or someone. Whether it is in death, or simply a parting of ways, it’s not easy. I struggled to find the words for the gentleman whose wife is dying.
And I just got word another patient has likely entered the final stages of his journey and is now actively dying.
All of this in one day, within a few hours.
I need a drink.
I feel completely overwhelmed with my job today.
I need to let these people go. I can’t take this home with me.
Husband is coming to pick me up. He won tickets to see an early screening of Godzilla. I need mindless entertainment tonight. Thank goodness my mom can stay with the kids.
From the time of antiquity, healers, physicians, medicine men have treated their patients in the home. In the United States, up until a century ago, a visit to the home was the standard way of delivering medical care. Today, things are much different. A study published in the New England Journal of Medicine in 1997 looked at the frequency of house calls to the elderly. Shockingly, less than 1% of Medicare patients received house calls from physicians. I suspect that this remains the case.
And let me be clear, what I am addressing here are the home visits by a patient’s primary care physician, not the walk-in clinic doctor opening up a house call business.
The days of your family doctor coming to your home instead of you going to their office, are largely over, I think. Although my colleagues still make house calls, mostly for their elderly and housebound patients, as well as those dying at home, it’s not very often, and I can usually hear them grumbling about it. “Ugh, I have to make a house call.”
I am proud to say that I have made a few house calls, albeit not many, but when I feel it would benefit my patient, I make the effort. Granted, I have a much younger patient population than my colleagues, so the opportunities for home visits are few and far between. I expect this to change as my patients age. I was interested to find out what the state of house calls is in this country, so I looked it up.
In 2010, family physicians in British Columbia were surveyed about house calls. The sample size of physicians who completed the survey was small. After all, who has time in their busy practice to fill out a survey among all the other paperwork? In this study, 73 surveys were completed (250 were sent out). Of those completed, 87.7% stated they had done at least 1 house call in the past year; 31.5% did house calls at least once a month and 16.4% did them at least once a week. What I found interesting was that when the study authors looked at the physicians in two groups – those who graduated from medical school before 1990 and compared responses to those who graduated in 1990 and after, they found:
The 49 physicians (67.1%) who graduated from medical school before 1990 were no more or less likely to have done at least 1 housecall [sic] in the past year than the 24 physicians (32.9%) who graduated in 1990 or later (n = 42, 85.7% vs n = 22, 91.7%; χ2 = 0.53, P = .47). However, 11 (22.4%) physicians who trained before 1990 did housecalls at least once a week compared with only 1 (4.2%) physician who trained in 1990 or later (χ2 = 3.92, P = .048).
Younger physicians are doing about half the house calls their older counterparts are doing and even less are doing them once a week. The tide is turning, indeed. Even more interesting, is the report from the National Physician Survey:
The National Physician Survey reported that, in 2010, only 47.8% of British Columbia (BC) family physicians offered their patients housecalls and 0.9% described housecalls as a specific area of focus in their practices.2
Family doctors seem to prefer to see their patients in the office, not in their patients’ homes. I can understand why – it’s more convenient to stay in the office, travel time in the city can be a nightmare, and remuneration may leave something to be desired. After all, in the time it would take to travel to visit one patient, a physician could see 5 – 10 patients in the office.
A lot can be learned from visiting a patient at home. For example, an 85-year-old woman who has had multiple falls in recent months; she can’t come to the office because she’s in a cast after having broken her ankle. You, as her physician, decide to take the visit to her home. Upon walking in the door, it’s quite evident why she’s falling a lot – the floors are lined with ratty carpets, even you almost trip on your way in!! The patient’s daughter is also present for the visit and instead of discussing the fracture, the visit is spent discussing removal of the carpets!
I made a home visit this week to a patient who is dying of cancer. I called her husband last week and asked if she was well enough to come into the office. She has a team of doctors looking after her, one of whom is a palliative care physician who makes home visits every few weeks. A visit with me at this point is purely supportive in nature as her palliation is being tended to by the specialists. Her husband said that, while they do make it to chemotherapy appointments, and other specialist appointments, it takes a tremendous toll on his wife and he didn’t think she’d be up for an office visit in addition to their weekly outings. I knew he wouldn’t suggest a home visit – most of the time the last thing a patient wants is to impose on their physician. So, I gently asked if she wouldn’t mind a house call. The pause on the phone was telling. “That would be wonderful for her,” he said. “She would enjoy that so much.” He sounded a little bit surprised that I would offer.
Seeing a patient in their home environment is one privilege of family medicine I didn’t expect. Once you step foot into their home, they cease to be “just a patient”. You bear witness to their real life, to the home they have made, to their hopes and dreams, to their sorrow and sadness. My patient and her husband welcomed me into their home, offered me a delicious cup of coffee and we talked. We talked about her cancer and her pain; we talked about how chemotherapy was going; we talked about the cat I saw roaming in the backyard; they told me how they met in Spain thirty-five years ago; and we talked about their four children. I saw the hope flicker in her eyes when she talked about the chemotherapy that helped her pain and maybe, just maybe, is shrinking the tumors. I saw the courage in her husband’s eyes as he tended to her needs and fluffed the pillow she had behind her back. I saw the profound sadness in her eyes as she struggled to find the words to describe what it’s like to plan her own funeral.
Most family physicians don’t do house calls anymore.
I am not one of them.
A while ago, I posted about how it sucked that every time I go on maternity leave, one or more of my patients gets seriously ill right before I go. I know it’s just part of the job, some of my patients are going to get sick and some are going to die. It just feels worse when it happens and I’m not physically present in the office to get the news.
Well, one of the three patients I was worried about dying while I am off, has died. I got the news the other day that a lovely woman, a patient of mine for 6 years, has succumbed to her blood cancer. I knew it was coming based on reports I had been receiving from her specialists over the summer. I just didn’t think it would happen 2 weeks into my leave. I see most of her family but hadn’t seen them in quite some time. Either they are relatively healthy, or more likely the case, they were busy with caring for their wife and mother. In any case, I am now faced with the question: Do I reach out to the family?
Normally, I wouldn’t hesitate to call the family upon hearing the news that a family member passed away. But I am not working and I haven’t seen the family in almost a year. A part of me wants to reach out, but I worry I may be intruding and perhaps it’s best to just let it go and address it when I see the family again.
And I have to ask myself, am I reaching out for their sake, or my own?
So, lately daughter has been using the “d” word a lot. Died. Dead.
She found a picture of the cat I had growing up and asked me about it. I told her I had the cat for a long, long time and she isn’t here anymore. “Did she die and go to heaven, mommy?” I was a bit surprised. I asked her how she knew about that and she said “My yiayia (grandmother) told me about her Uncle who went to heaven.”
Wow. So I’ve been wondering exactly how much she actually understands about the word, the concept. I didn’t pursue it further since she really didn’t ask.
Then, I got my answer when she came home from JK yesterday and started talking about Terry Fox. Her school held their annual Terry Fox Run/Walk around the neighborhood. Terry Fox (for those who don’t know) was a young man who developed bone cancer, lost his leg, then started a run across Canada to raise awareness for cancer and raise money. He never finished his run. He made it as far as Thunder Bay when the cancer that took his leg returned. Every year since (this happened in 1980-1981), schools and communities across Canada hold an annual Terry Fox run to raise money for cancer research.
We asked her what she learned about Terry Fox.
Daughter: “He got sick in his leg.”
Daddy: “Then what happened?”
Daughter: “The doctor took his leg.”
Daddy: “And then what happened?”
Daughter: “The gave him a robot leg and he started running.”
Daddy: “That’s right. Then what happened?”
Daughter: “He died and went to heaven.”
(By this point, I am almost crying watching this exchange.)
A few minutes later, my daughter says, “I hope he gets better.”
So there’s the answer to my question. She has no idea what it means to die and go to heaven. Phew. Wasn’t sure I wanted to explain that just yet. I mean, she isn’t even 4 yet! I don’t want that innocence lost just yet. I don’t even believe in heaven really, so I’m not even sure how to handle that question. I hope I don’t have to for a while.