Skip to content

The good shepherd

A West Van doctor finds his calling in palliative care

DESPITE being five years younger, Alexandra Christian always fell into the role of protector with her sister Sheryl because she was deaf.

Christian describes her sister as her soulmate with absolute conviction and without a trace of self-consciousness.

"There was nobody as pure, as innocent and good-hearted as Sheryl. You could not turn your face away from her because her smile was so infectious."

In September of 2009, when Sheryl was 51, she was diagnosed with leukemia.

Within two days of hearing the news, Christian flew to San Francisco where Sheryl lived and spent two weeks with her sister. During that time the diagnosis was confirmed and Stanford Hospital recommended an extremely aggressive treatment regime. After a week in hospital, Sheryl decided she did not want to take the treatment and made up her mind to come to West Vancouver to be with her sister when she died.

"So, she came to Canada to live with me. But we needed pain control for her. The social worker at Stanford Hospital connected us with Jim Cormack, a social worker at Lions Gate Hospital, and he referred us to Dr. Sugar.

"Dr. Sugar said that whether she decided to do treatment or not, he would help."

Sheryl did try a course of treatment here under oncologist Paul Klimo, although it was not the aggressive course that Stanford had recommended. Even so, "side effects knocked her out, she got very sick and had to be taken to the hospital in December. When she came home after Christmas, Dr. Klimo gave her a couple of weeks (to live). She was so weak she could not walk, but she wanted to come home. So we organized everything for her that she needed medically at home.

"Slowly, slowly, she started getting stronger, she started walking again. The question then was: Did she want the second cycle of treatments? Each cycle was three treatments. She did one of the second cycle and decided, 'Absolutely not.'

"Throughout all this time, it's hard to convey how instrumental Dr. Sugar was to Sheryl's well-being. She needed medication, she needed care, sometimes she would just cry and he was more than a doctor, he was her angel. If she needed him, he would come. It didn't matter what time, he would come sit with her. As soon as she saw him her face would just light up. They had this incredible bond. She could see that he truly cared, he wasn't just prescribing medication.

"And he was concerned about the effect all this was having on me. I was a mess. And he cared about how my son (then nine) was feeling throughout. Sheryl was his second mom. She had taken over his bedroom and he was witnessing all of that. Every time he came, it was important to Dr. Sugar to talk to John and to talk to me. To have that was unbelievably good."

In June, Sheryl's health began to decline again at the same time that Christian had to take a three-day business trip. While she was gone, Sugar visited every day - "Surely, that's not in their job description."

On the last day of July, Sheryl told her sister that she did not expect to live to see her birthday on Aug. 30 and urged Christian to fly to San Francisco and put her things in order, a job Christian had been putting off because of its finality.

Before Christian went to California, Sheryl had said she wanted to do something for Dr. Sugar. She was an artist and thought she could paint him and organized a photo during a visit from Sugar while Christian was in California. But when Christian returned after five days, Sheryl had declined "a hundredfold." She couldn't walk and by Aug. 22 the pain meds were no longer working. Sugar changed dosages and timing, but after two days of respite, Christian was instructed on how to give her sister subcutaneous injections as required. Her final decline happened so quickly, Sheryl only managed to sketch in Sugar's face for her painting. So Christian asked her sister if she wanted her to finish it.

"She looked at me and laughed. But I put the easel right by her bed and we talked about the background colour and his shirt. But that was all. The rest I had to finish. I'm not an artist, but I had to finish it."

Sheryl died on Aug. 31, 2010, comatose from pain medications. But she celebrated her birthday with her caregivers a few days before that on Aug. 26. Dr. Marylene Kyriazis, the contract pharmacist for palliative care, brought a cake, social worker Jim Cormack came, and the nurse was there. Sheryl could no longer speak and was on the edge of consciousness, but, says Christian, she tried so hard to stay awake until Sugar came and smiled at him when he walked in the room.

"During the time that Sheryl was so poorly the last few days, Dr. Sugars's mother passed away. We were worried, but he told us that he had promised to look after Sheryl and he would keep that promise. So even when he had to fly to the East Coast, he called every single day to see how Sheryl was doing. I don't know how many doctors would do that. And when Sheryl passed away he didn't say, 'Job done.' He came to see me, to talk to John.

"A man like that should be honoured."

. . .

Paul Sugar grew up in Toronto. At school, he loved sciences but lost that focus for a while at university in Windsor, regaining it at the University of Toronto where he finished his science degree and discovered he liked "figuring things out."

In 1969, he applied to medical school at the University of Toronto and professes mild surprise at being accepted.

Three years of classes, a year's clinical clerkship and a year of rotating internships later, Sugar was a doctor who knew he did not yet want to tie himself to a practice: "I've always had a bit of a wander lust." He tried emergency department work and covered other doctors' practices as a locum. Sugar says he had always had a hankering to visit British Columbia, applying unsuccessfully to intern here in 1973. He met his wife-to-be in medical school, but she had no great yen to try the West Coast. Yet after Sugar made the move in 1981, she followed him out, they got married and ended up sharing the West Vancouver practice where she continues to work two days a week.

In 1985, Sugar took over a general practice in Horseshoe Bay from a "great" elderly doctor. The transition was, as Sugar puts it, "interesting."

"Nobody thought anyone could replace this old doc." But 25 years later, Sugar found himself in exactly the same position as he handed on his own practice in order to concentrate on palliative care.

Sugar has experience in many different kinds of medicine. "I've worked in emergency departments, I've worked in locums for many years, I worked at Oakalla prison for six months, I've worked at the Downtown Community Health Clinic, and then finally settled into this practice. But I've always loved hospital-based medicine; always assisted at my own patients' surgeries, always looked after them in hospital. But I didn't get along all that well with the stuff in the office. So, when someone came along that was willing to take over, we tried it for a time. He proved to be an excellent physician, my patients loved him. He is moving in there with a family and three kids, just like I did. It seemed like the perfect time to make a transition if I was ever going to."

Medicine, says Sugar, has always been "a fantastic people job" and "a fantastic science job. People will walk in off the street and tell you things they won't tell their best friend of 30 years. So there is that opportunity for a kind of intimacy that develops with patients, especially the ones you get to know over a period of time. That's pretty unique.

"It's kind of like being a detective. You've got someone sitting in front of you who is giving you a story and, just like a detective, if you know the right questions to ask, and if you know where to put the emphasis, and where to play with that, 90 per cent of the time you have probably got a working diagnosis before you have even touched the patient.

"Then you follow that up with an examination and lab work and you confirm what you thought or find another route to go. It's kind of meandering in and out of information: knowing how to get it, knowing how to extract it, where to put the emphasis. Everyone is different, and you have to be able to read people. Some people will poohpooh every symptom they've got, other people will embellish in a huge way some meaningless thing that doesn't require a lot of attention."

So why he would give up something that he obviously likes for palliative care?

Sugar again refers to his wander lust and the desire for change. Pushed, he says, a good practice requires continuous and efficient office management and that he has never been efficient. "I've always seen fewer people in a day or per hour. I enjoy it, and I get sidetracked. I've always taken too much time to talk to people and then at the end of the day I've got this stack of paperwork to do."

So, two years ago, at 62, Sugar decided it was time to make a change and do more of the kind of medicine he loved to do.

"Palliative care basically involves the same type of skills as any type of medical care, but that intimacy you have with patients - that's kind of in spades with palliative care.

"You and I sit here and are intellectually aware that life is limited and that we are all going to die, but people who are told they have a limited amount of time, that time becomes more precious, that time becomes more scary for some. Focus changes. Is my family going to be OK? Is it going to be painful? Will I be scared? Do I get religious at this point, do I not? What do I do here?

"It's a very dependent time and it's a real opportunity to help somebody work through all of that. You try and feel them out. Some people are religious and say, 'Yes, it's my time doctor. I'm happy with that. I've had a good life. And they just kind of coast through the process. Some people are very scared: agitated, anxious, clinically depressed, upset, angry - just in turmoil.

"You have to be able to look at them with clarity and give them all the room they need and a little bit of guidance.

"You can't do it all - but you can do a lot."

. . .

There are about 200 people currently registered in the palliative care program on the North Shore while approximately 160 people have been admitted to the North Shore Hospice in the last year.

In 2009, 450 people were referred to palliative care with 250 deaths on the program. That compares to approximately 1,200 deaths on the North Shore in total.

Patients are referred to the program from the hospital's medical diagnosticians, from the two doctors in the chemotherapy unit and from the hospitalists - doctors who look after inpatients who do not have a family doctor or who have one who does not have admitting privileges at Lions Gate.

"They'll call and say 'I have a patient that needs pain control' or they have a patient that is declining and needs palliative care. So I go and spend a long time dancing with them to try and see where it is they want to go, how they want to go, how they are coping."

"The dance" is not just a clinical diagnosis, it's also an emotional dance. "A 62-year-old lady with breast cancer and a large amount of disease in her bones is referred to me for pain to see what I can do for her. This lady is incredibly debilitated from the pain that she's been suffering, unable to move and incredibly scared about what is happening to her.

"She is also afraid to ask the questions.

"When I have a situation like that, it's almost like I get excited by the challenge of just how best to deal with this person - to bring them along slowly and carefully to a place of comfort."

Sugar puts an extraordinary amount of emphasis on the word "best."

"I just saw that lady. She was pain free, she was back at work for half a day a week, she was enjoying her family. It was just a treat to see that happen.

Then is palliative care really all about comfort?

"In many ways. Not just pain control, but emotional comfort, trust, a sense of being looked after, and coming to terms with what is happening."

Sugar says he is confident that he can achieve pain control in all of his patients but acknowledges that sometimes he needs to "tinker" since two patients with the same symptoms can have markedly different responses to the same drug and dosage. Advances in pain control in recent years have less to do with new drugs than an improvement in the convenience of delivery systems and the treatment of side-effects from pain meds.

"There's a lot of science and research going on. You can have two patients with prostate cancer, both with bones full of tumour. One will have a lot of pain and one won't. Why? No one really knows. But there is a lot of work being done on that kind of question."

His work week can vary from 35 hours to 65 hours a week, depending on how many patients he is treating. Besides the patients themselves, he spends at least 30 per cent of his time counselling their families.

"Families need a fair bit of care, and sometimes you have to draw them out, especially when there are children involved. You have to give them the time and opportunity to talk about their fears."

Is there a difference between hospice and palliative care? "Well, we used to have the entire ward open with our hospice patients on Seven West. The palliative patients are patients we bring into the acute care ward where we do all the investigations, the blood work, the X-rays, the CAT scans. We try and figure out what the problem is, we try and solve it. If the patient is in a condition to go home again and wants to go home again, then we can do that. It's like coming to hospital for anything else. Whereas at the hospice, we don't do a lot of the blood work, the X-rays, the investigations. We don't push people as hard to mobilize, because there is not much more we can do for them. We and they accept that they are probably not going home. Their emotional and physical comfort is the biggest focus in hospice care.

"In palliative care, sometimes you're a little bit stingy with the medications because you want them to mobilize, get their strength back and go home again if they have the potential for quality of life with their family and for themselves.

. . .

Sugar is not a religious person. "I had a 35-year-old male patient who was dying, and his wife asked me if I had faith, and I had to admit I did not have much in the way of religion. So she asked me, 'Why do you do what you do for people so well if you know that there is no real reward?'

"I thought about that and I said to her, 'I think you are just built a certain way. It doesn't really matter if things make sense or not, it's just who you are. We are who we are whether you think there is something or nothing. That's the way it is.' Why do you love your children so much if you are an existentialist? You just do.

"I feel I can see what people need and I love to give it to them and that makes my job very rewarding."

There is pain and heartache that comes with the job, however.

"I had a 62-year-old man die last week who I'd had a long relationship with. A very bright guy, dry sense of humour, tongue in cheek. We would go back and forth with a little bit of mutual abuse, a whole lot of fun. About 10 days before he died, I said to him, 'Peter, you look scared today. Am I anywhere near the mark on that?' And he said, 'Yes, I am.'

"I saw that as the beginning of his end. And yes, it's hard sometimes."

Sugar says his relationships with patients that have no family or friends can become even closer. "I remember this one British guy who had fought in North Africa who was just a treat. I was taking a history from him and I asked him if he had any allergies.

"He replied - he was 92 this man - 'Yes, but I got rid of her in 1981.'

"He had the most wonderful sense of humour. He was all alone and we struck up a wonderful relationship. He enjoyed my visits every day and I would sit on his bed and he would carry on. He was very accepting of his fate. He would say, 'I shall remember you - but not for very long I suspect.'

"I remember another guy who was dying of liver failure; a gruff, old man who'd had a hard life with a lot of drugs and alcohol. Because he had no family and no resources, I had to ask him the question, 'What do you want to have happen after you go?

"He looked at me and he went, 'Doc . . . burn me.'

"I just broke out laughing and he started laughing. You get to have these relationships that are incredibly neat. Conversations that are," Sugar pauses, "not ordinary."

Asked to define failure in his job, Sugar responds with a story.

"I remember this 59-year-old history professor with end-stage lung disease. He said to me, 'I know I'm dying, but I don't want to die short of breath.'

"And I said, 'OK, we can do that.' I wrote the orders and one night he got acutely short of breath, The orders were there to give him the medication. The nurse felt that it was too much to give him. She didn't give it to him and she didn't call me to ask me what to do. When I came in at 6: 30 in the morning, his wife told me he had been short of breath and struggling all night. I gave him some medication and got him comfortable and he died a short few hours later.

"Those things do happen, and I find them so frustrating because it's not necessary. I very much differentiate between patients who are close to death and those who have the potential for a quality of life - even if it's not a huge quality, a quality that they themselves can appreciate. For those people at the end of the spectrum where they've got a number of days left and that's it, I want to err on the side of more medication. I want to err on the side of comfort. And sometimes, because of protocols, you're fighting the system in an approach."

Sometimes, says Sugar, you take a chance based on patient wishes, knowing that a bad outcome is possible. He recalls a recent patient, a 62-year-old woman who lived on Bowen Island, "a fantastic woman, very bright, very vibrant, very sharp, very excitable - a lovely lady with a lovely husband.

"She wanted to pass away on Bowen. She had a lot of tumour burden and the potential for what we call a catastrophic event and nobody really wanted to take her on as a patient because they felt she would be better served either in hospital or in hospice. So you could either take the pathway of what I consider to be inferior medical treatment, or this woman should have it the way she wants - she's a big girl.

"I had to eye-to-eye her. I went over to Bowen and told her and her husband the bare-bones facts about the things that could happen. She was accepting of all of it and said, 'This is where I want to be.'

"So, I put in place all those things that were possible for an event like a bleed or an acute event and to help her passing be comfortable: quick-acting drugs, established ports for administering them, they're all pre-drawn and ready to go.

"She died about five weeks later having had the most peaceful, wonderful five weeks. I was so comfortable about that - but I know that was a situation that could have gone completely awry.

"I saw her the day before she died, and she had the most lovely smile on her face.

"It's all about relationships and connection and intimacy and a kind of trust that develops. That's hugely important for the dying patient: to feel that they are being looked after, to feel that they are being heard, to feel like they are important."

mmillerchip@nsnews.com