Physician-Assisted Dying Committee on Feb. 2nd, 2016

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

Senator Seidman.

[Judith G. Seidman, Senator, Quebec (De la Durantaye), C]

Thank you very much for your testimony today.

Ms. Baxter, if I might ask, you mentioned that there are 600 hospices across the country.

[Sharon Baxter]

There are 600 hospice or palliative care programs, either home-based, hospital-based, or hospices, and of those, only 80 are residential hospices.

[Judith G. Seidman]

Thank you. That's very helpful.

With that in mind, thinking specifically now about Bill 52 in Quebec, I'm wondering if there is anything you could share with us in terms of how the hospices are reacting to Bill 52, and if there is something we might learn from that right now.

[Sharon Baxter]

Thanks for asking that question, because I didn't fit that in.

The 29 residential hospices or residences in Quebec formed an alliance and went to the provincial government and were given an exemption, so that's something for you to think about if you're looking at site exemptions for hospices. That was granted in Quebec. Interestingly, the medical adviser of one of the hospices has ALS and pleaded with them to let her die in her own organization, and they have agreed that when the time comes, they will perform physician-hastened death in that one hospice. That sort of throws everything out when you have all the hospices standing together and then you have this one exception, but it was the right decision for them.

Generally, the hospice programs in Quebec raise $2 million to $3 million of their money from their communities, and they are not government funded. They do get some government funding, but we're talking half a million dollars out of a $3 million budget. They have to be connected to their communities, since that's where they get their money.

I think over time we'll see how this all goes. Right now they are standing firm in Quebec. The rest of the provinces are challenging themselves. The boards of directors are meeting now without knowing what the legislation is going to tell them. They're trying to figure out whether they'll generally say that they would prefer to transfer out, but we'll see where that all goes. That's just for the residential hospices.

The rest of the hospice and palliative care programs are really quite.... If they give the best care possible and a person wants physician-hastened death, they will refer to the right people.

[Judith G. Seidman]

That actually leads me to my next question, to which Professor Ells and Ms. Baxter and perhaps even Dr. Smith might respond, and that has to do with the referral process itself and the transfer that everybody has talked about.

I'd like to have some explanation of how you see that working. For example, when the British Columbia Civil Liberties Association was here yesterday, the solution they proposed was that physicians should have to notify some third-party body, whether it's the hospital or the health authority, of their refusal. It would not be to provide an effective referral but simply to notify, with the permission of a patient, about their desire not to carry out this service. In that way there can be a transfer of care for the patient, which is what happens in Quebec right now.

How would that work? Is it left to the provinces? Will professional regulatory bodies make some kind of systematized approach to this process? Is this something that should be in the federal framework? How do you see that happening?

Maybe I could start with Dr. Smith.

[Dr. Derryck Smith]

If you look at how referrals are made now, you will see that they do not involve any formalized bodies in any of the provinces. Family doctors make referrals to surgeons, psychiatrists, and so on, and doing so is all pretty informal, so if you want a system put in place, there is nothing to build on currently.

I suspect what is going to happen is that consumer groups will spring up. I know my organization is interested in helping doctors who are interested in this to form organizations so that it may become well known which doctors are going to be involved and which ones aren't. That is the model used for most abortion services in Canada currently. I would be reluctant to institutionalize a referral system, but, on the other hand, we have to make sure that the patients' autonomy and needs are put at the forefront, rather than what institutions and doctors may wish to do.

We need to have some public way of getting referrals from doctors who do not wish to participate so that a patient's care is continuous and people don't get dropped, because this is a critical stage in someone's life. This is not a stage in your life when you want to be digging around trying to find a new family doctor. There needs to be some thought given to how that's going to be made operational, and I don't have a ready solution for you, I'm afraid, at this point.

[Judith G. Seidman]

Thank you. I appreciate that, because that's exactly the reason for the question. It's the point you just made, which is that we need to think about the patient. It needs to be patient-centred, so we need to ensure access when a physician decides he can't do it.

If I might ask Professor Ells—

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

I'm sorry, but I have to end it there. It's a fast five minutes. Maybe you can nudge Senator Cowan and he can help you with a question.

[James S. Cowan]

I'm always happy to help Senator Seidman.

I was just going to follow up with Dr. Smith first, and then perhaps invite our other guests to comment as well. It's about this whole business of access and making sure that Canadians, at this critical stage in their lives, at the end of their lives, have equality of access. They're not, generally speaking, as mobile as they would have been at earlier stages in their lives.

Do you see any way that this can be accomplished other than having a general framework established at the federal level and then leaving it up to the provinces, in their own ways, to come up with an equivalent regime that meets the guidelines and the standards set at the federal level? At the end of the day, isn't that the only way in which we can guarantee the kind of access that the court says we must have for all Canadians?

[Dr. Derryck Smith]

I'm not an expert in federal or provincial regulation. What I would not like to see is some kind of very bureaucratic process involved, because that's likely to get bogged down.

I can tell you that in British Columbia I'm aware of three and possibly four family doctors who have expressed an interest in providing these services. If someone called me up, I would recommend that they go to see them. My organization, Dying With Dignity, is likely to establish informal rosters of doctors who are prepared to assist patients in accessing this service.

I don't know if that's going to be good enough, though, but the risk of doing it federally or provincially is setting up a cumbersome bureaucracy. I don't know—

[James S. Cowan]

Excuse me. I was speaking about a sort of overall framework rather than a detailed bureaucratic regime, but with standards that are available—

[Dr. Derryck Smith]

I'm very much in favour of standards. I think there should be rules such that there must be a smooth transfer of service from doctors who do not wish to participate to those who will. That's a heavy burden to put on doctors who object, but it's important, because these are vulnerable people at the end of their lives who must not be left dangling because their doctor does not want to provide this service to them.

So principles, yes, but as to specific regulations, I don't know.

[Sharon Baxter]

I want to respond to that.

We have issues about transferring from one setting of care. In this country, it's terrible. It's terrible getting from acute care into long-term care or home care or getting out of hospital and into home care.

We don't want that to happen at this stage, so what we need to do is make sure that the onus to refer is on that person, the physician or whomever, and make sure that they follow through, and follow through in a timely manner.

I've talked to the woman who runs the hospice program in Oregon. They're 16 years in, so they've worked out a lot of their issues. Even though the medication is administered by the patient and the family, there is a physician there, and there is a pharmacist who has to prescribe and whatnot. What they do there is that the hospice program says their goodbyes to the patient and the family, and then a group like Dying With Dignity that's a state-run organization comes in and actually does the thing.

I'm listening to what Derryck is talking about. I think we need to make sure that we have some safeguards or some organization that we can quickly go to and count on to be able to help us with the referrals.

[James S. Cowan]

Can I ask Professor Ells to comment briefly on that?

[Dr. Carolyn Ells]

Referrals or transfers take place at two different levels. One is between the attending physicians for the patient, and another may take place between institutions. The one between physicians is not so problematic, other than firmly requiring a timely transfer. These requirements are already in their codes of ethics. They're already in place.

However, institutions should be required to know who is available in their institution to provide these things. Institutions that make conscientious objections should—

[James S. Cowan]

But I don't understand how.... I can understand how an individual can have a conscientious objection, but how does a building have a conscientious objection? How does it have an ethical—

[Dr. Carolyn Ells]

It's not quite as comfortable, but hospital institutions, like many institutions, have missions, visions, values, and statements. If they're an ethical, robust organization, their values ought to drive their strategic plan and how they roll out their policies and provide their services.

I'm aware, for instance, of a particular small Catholic hospital that opened up a large palliative care unit in Quebec—poor timing—and then had to struggle with whether or not it would eliminate this important service for the people in their community because of their own conscientious view.

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

Thank you, Dr. Ells.

Mr. Aldag.

[John Aldag, Liberal, Cloverdale—Langley City, BC]

Thank you.

Just before we get into a question, I wanted to clarify a point that my colleague from Langley—Aldergrove made on the session that we had this past weekend with our respective communities. Some really good information was shared, but I would be hesitant to throw out any numbers or statistics, because it wasn't a statistically accurate poll. It wasn't a representative sample. On things like age, I wouldn't want to mislead our committee members on that being a definite piece. I just want to share that with the committee as a piece of context for what was done.

[Mark Warawa, Conservative, Langley—Aldergrove, BC]

On a point of order, MP Aldag has made reference to this document. It was submitted in a timely fashion, as required by the committee. Because of the overwhelming amount of material that's being presented to the committee, I would ask that this document, which is very accurate, be provided to every member of the committee. There would need to be unanimous consent to do so. It will be provided, hopefully in the next day or two, because it hasn't been translated yet, but I could pass this out, and then MP Aldag could actually refer to it. He does not have this yet.

[John Aldag, Liberal, Cloverdale—Langley City, BC]

At this point I simply wanted to clarify that it wasn't a statistically accurate poll or representative sample. It was a point in time when a group of people from our constituencies came out and gave us feedback, which is very useful to us. I was just concerned that perhaps it was misunderstood as being something other than what it was, and I just wanted the committee to realize that when there were numbers of—

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

I don't think that's a point of order. I think we'll take under advisement your concern about getting the report to all of the committee. We'll get it when it's translated.

[John Aldag, Liberal, Cloverdale—Langley City, BC]

I'll move to my question. The question is for Ms. Baxter.

You mentioned, and I have read about it as well, that in Oregon we've seen one example of how palliative care can increase once physician-assisted dying comes in. I'm wondering if you have a comment on what the trend is, either in Canada or even internationally, in terms of palliative care. Are we seeing growth just as a result of whatever is happening, or are investment levels fairly stagnant? We see the Oregon example of how physician-assisted dying is actually bringing about increased palliative care investment. I'm wondering what's happening in the palliative care fields and how this relates.

[Sharon Baxter]

The number of Canadians who are aging out and dying and having diseases and needing good end-of-life care is increasing. Just look around the table; there are a lot of people with gray hair in the room. I just happen to dye mine.

Therefore, we need to provide those services. CIHI, the Canadian Institute for Health Information, puts out a terrific little chart that shows how Canadians die. There are four trajectories. They are sudden death, disease, frailty, and organ failure. Organ failure means heart attack and Parkinson's and the long dementias and stuff.

We need to think about how Canadians die and what kinds of services they need. They don't all need the care of a specialist, palliative care by a full team, or intervention of the type needed by somebody who has cancer and drastic pain and symptoms at the end of their life. We need to look at what services and what kind of palliative approach Canadians need.

We've struggled with this issue in the last three or four years. If 65% of Canadians never see a palliative care specialist, how do we ensure them a better end-of-life experience in which their needs are met and they won't be showing up in hospitals? Right now $35,000 per year per patient in the last year of life is spent on unplanned hospitalizations because we don't do a very good job of supporting those people who are living in their communities and in their homes. We can do a much better job of that. We need to consider all that.

I think it's our responsibility to do a much better job with all that, particularly in light of physician-hastened death. We've said to our community that this is an opportunity. We see it in other jurisdictions, and other jurisdictions have said they have to do the best they can if they're going to offer hastened death. I think that we have to call ourselves on that. We're not talking about millions and millions of dollars for specialist care or palliative care programs, but about pushing out this primary-care approach. That means every physician and every nurse talks to patients and their families about their needs. It means that we have checklists and that we look at frailty indicators. We have 85-year-old patients coming into a doctor's office and nobody asks them any questions about how they are doing, whether they are isolated, whether they have enough food, or whether they have fallen. There are lots of things we can do and there are lots of ideas, including this national framework that we put out.

We're all in favour of doing a better job across the board. If a patient chooses physician-hastened death, so be it. We need to do a better job of not deferring and not delaying, on working together in these systems, and on not prolonging people in the wrong place at the wrong time. There are way too many senior citizens lying on hospital gurneys in corridors. We really need to do a better job.