Proceedings of the Standing Senate Committee on
Issue 19 - Evidence - Meeting of December 9, 2009
OTTAWA, Wednesday, December 9, 2009
The Standing Senate Committee on National Finance, met this day at 12:20 p.m. to give consideration to the subject matter of Bill C-56, An Act to amend the Employment Insurance Act and to make consequential amendments to other acts.
Senator Irving Gerstein (Deputy Chair) in the chair.
The Deputy Chair: Honourable senators, if I may call to order the meeting of the Standing Senate Committee on National Finance. Today we are resuming our pre-study of Bill C-56, An Act to amend the Employment Insurance Act and to make consequential amendments to other Acts.
As members know, the purpose of this legislation is to extend employment insurance benefits to the self-employed persons who are not presently entitled to receive them. Over the last two days, we have heard testimony from government officials, the Canadian Federation of Independent Business, and the former Chief Actuary of the Employment Insurance Fund. At our meeting yesterday, questions were raised with respect to the compassionate care benefits provided under the Employment Insurance scheme.
To help us understand some of these issues better, we are pleased to welcome by videoconference from Manitoba Dr. Mike Harlos, Medical Director, Palliative Care Program with the Winnipeg Regional Health Authority. We also have Denise Page, Senior Health Policy Analyst, National Public Issues, Canadian Cancer Society with the Canadian Cancer Society, and is here on behalf of the Quality End-of-Life Care Coalition of Canada. Finally, we also welcome Sharon Ruth, who is a compassionate care advocate.
Honourable senators, as we have one hour for this session, I would appreciate your continued cooperation in keeping both questions and responses succinct.
Denise Page, Senior Health Policy Analyst, National Public Issues, Canadian Cancer Society, Quality End-of-Life Care Coalition of Canada: Mr. Chair, I am Senior Health Policy Analyst for the Canadian Cancer Society. I am chair of the Family and Caregivers Support Committee for the Quality End-of-Life Care Coalition of Canada.
The coalition represents 30 national associations and organizations that believe every Canadian is entitled to quality end-of-life care.
First of all, I must thank the committee for this invitation. The coalition now has the opportunity to speak to Bill C- 56. The coalition welcomes Bill C-56, an Act to Amend the Employment Insurance Act and to make consequential amendments to other Acts, which will give self-employed workers access to special benefits.
The coalition has been fighting since 2008 for the improvement of compassionate care leave. Furthermore, one of our main concerns has been that many people do not have access to it, including the self-employed. By virtue of the fact that they are self-employed, these workers are often family caregivers who take on those responsibilities, which threatens their job security and income. You will understand that the coalition supports Bill C-56, because it addresses one of our main concerns. With the passing of this bill, independent workers will have access to all special benefits, including compassionate care leave.
Bill C-56 represents a first key step to ensure job security and income support for self-employed workers, who assume the responsibilities of family caregivers. We must, however, point out that this is only a good first step. The coalition feels that the duration of the benefit period is restrictive and limits access to benefits. We also believe that the terminology should be reviewed, and that "a risk of death" should be replaced by "gravely ill". This would be very much appreciated. No one can predict the time of death, not even a doctor.
Many people do not have access to benefits because the doctor is not ready to sign such a request or the family caregiver is not ready to receive in advance the death notice of the person they are caring for. We therefore encourage the federal government to consider extending the benefit period for compassionate care leave and making it similar to maternity leave, to make the program more flexible so that people could use a few days a week instead of only blocks of entire weeks, and to review the terminology concerning the imminent risk of death.
We would also like to draw your attention to the creation of a companion program and a tax benefit for family caregivers. The tax benefit could be similar to the Canada Child Tax Benefit.
You will find more details in the document that you were given.
Dr. Mike Harlos, Medical Director, Palliative Care Program, Winnipeg Regional Health Authority: Thank you very much for the opportunity to speak with you. My understanding of a role I might have here is to provide some insight into the underutilization of the compassionate care benefit and perhaps some implications for its expansion to the self-employed.
When I was reading some of the transcripts from yesterday it was evident, as Senator Carstairs pointed out, that the compassionate care benefit is not used to its full expanse, as it could be.
One of the significant challenges relates to the issue of prognosis and the determination of a possible death within 26 weeks. The prognosis is challenged in terms of its estimation since physicians are notoriously poor at predicting that.
In a recent educational document that I am reviewing for CPAC, the Canadian Partnership Against Cancer, there is an inclusion of an analysis of seven studies looking at physicians' accuracy and prognosis. It found that, in general, at least 30 per cent of the time, they are incorrect and it is through overestimation. Therefore, physicians tend to be overly optimistic, which then unfortunately might result in missing the opportunity to take the time off because death may occur sooner than expected.
Another challenge with regards to prognosis, as alluded to by Senator Carstairs yesterday, relates particularly to pediatrics where there is a reluctance to accept a prognosis. There is very good literature that came out of Boston in 2000 that showed that parents were at least three months behind their clinical teams in acknowledging an end-of-life phase for children who are dying of cancer. Interestingly, even during the parent-acknowledged end-of-life phase, almost one third of them felt that the treatment was being focused on trying to pursue a cure rather than on a comfort- focused approach.
The challenges around prognosis are barriers to accessing the compassionate care benefits. What we see clinically and programmatically in Winnipeg is usually a late referral. We may get a referral within two or three weeks of someone dying, which usually reflects a late acknowledgment of that phase. Then, for families to muster the energy in that extremely difficult time to apply for the benefits and to wait the two-week period, it can be quite a challenge. I do have some thoughts on how that might be addressed.
One thought I had about the self-employed and these benefits, is that it may actually be easier for a self-employed person to utilize them because often that individual is in a bit more control of their time than someone who is not self- employed.
Sharon Ruth, as an individual: Thank you very much for this opportunity to speak. In addition to being here has an individual, I also was an Eastern Ontario parental adviser for POGO, which is the Pediatric Oncology Group of Ontario, and I am a member of OPACC, another group that advocates for childhood cancer issues. I have handed out some information that you can read later.
In May 2003, my daughter was diagnosed with T-cell lymphoblastic lymphoma, non-Hodgkin's stage IV, the most aggressive type there is, and it was in her bone marrow. Both my husband and I were working and I took time from work and I took her to CHEO, where they did some blood tests and admitted her on the spot. The fact that I had a meeting the next day and two other children at home did not matter.
After the tests, they offered a treatment plan. They told me it was a serious cancer but they felt, based on all the research that has been done, with Terry Fox and all the cancer research dollars that had been raised, they actually had a cure for my daughter and told me we needed to follow a protocol.
Compassionate care begins at the beginning for parents with children. It is not an end-of-life matter because the medicines are working.
At that time, the hospital told us that we had to take her out of school. She was not allowed to go to daycare or to have friends over. We were in the hospital for almost 30 days so she could have daily rounds of chemo to make her better. We had a treatment plan and if we followed it, then it would be great. Unfortunately, my husband and I did not have enough holidays and sick days to cover off the initial six to nine months that we needed. My husband and I looked at each other. We had 100 per cent bills and one of us needed to leave work. My company is a great company; they allow one year off without pay. How would you make ends meet if your spouse had to stop working? I am sure you know families in that situation.
We were devastated by the severe financial implications of losing an income and, in order to comply for compassionate benefits, I needed that same doctor to sign letter saying that my daughter was going to die within 26 weeks. There is a contradiction there.
At that time, CHEO was telling all the parents that compassionate care would be the solution. However, we soon found out that compassionate care is focused on end-of-life care. There is end-of-life care while at the same time; the hospital is trying to save our children. They needed an advocate. I started a petition. I have given you some copies of it — in fact, I wrote a book to tell the story about it because I need to get it across to the people in charge that compassionate care is focused on the family at the beginning and not at the end. Cancer treatments are working; people are living and surviving.
In addition, with regard to Bill C-56, whether you are employed or self-employed, when your child is diagnosed with a serious illness of any kind, or a car accident for example, it rocks your world.
The Deputy Chair: Thank you very much, Ms. Ruth.
Ms. Ruth: My daughter is living today. I have given you a copy of her report card. She is a straight-A student, perfectly normal. She is back at school with friends and we are all grown up. She did not die.
The Deputy Chair: I appreciate you making those final remarks as well.
Honourable senators, I think I speak for the committee that few families in Canada will be spared from the anxiety and pain of having a family member or a close friend succumb to a terminal illness.
Ms. Page, could you give us some idea of how many Canadians are faced with terminal illness?
Ms. Page: With cancer?
The Deputy Chair: Let us start with cancer.
Ms. Page: One out of two will have cancer; one in four will die from cancer.
The Deputy Chair: One out of four will die from cancer.
Ms. Page: Yes.
Senator Di Nino: Has that data changed in the last 10-year period or five-year period?
Ms. Page: Regarding death?
Senator Di Nino: One in four and one in two. Has that data changed?
Ms. Page: Yes, it has changed. With an aging population, we will see that more and more will develop cancer. It is a disease for an aging population.
Senator Di Nino: Are you saying that it has gotten worse?
Ms. Page: About three or four years ago, one out of three people developed cancer; it is now one in two who will develop cancer.
Senator Carstairs: Obviously, I am a proactive person on this file and have been for a number of years. I was one of the founding members of the end-of-life coalition, so you can take me back that far.
Dr. Harlos, if the present definition of compassionate care were changed to "gravely ill" would that make it easier for parents to apply for this compassionate benefit? Would it make it easier for doctors to sign the forms?
Dr. Harlos: It might. "Gravely ill" is certainly a less restrictive term. I suppose that "seriously ill" would be too broad. In palliative care, we often speak in terms of people living with a "life threatening illness," particularly in pediatrics. Children are living with these illnesses, and it is not just cancer. In fact, in most pediatric palliative care programs, children with cancer represent about 20 per cent of the referrals. Many children with progressive neurological conditions and metabolic diseases have been on death's doorstep multiple times throughout their lives. You actually do not know if this will be the fatal admission to the intensive care unit or not until it is finished.
I think "gravely ill" is a reasonable change with the possibility of dying within a certain time, perhaps 26 weeks or 52 weeks.
I want to thank Ms. Ruth for sharing her story and point out that it highlights, most particularly in children, that palliative care is a parallel process often to aggressive care. Palliation is not end-of-life care, it is comfort-focused care and quality-of-life focused care. I agree that there should be that opportunity to allow that time, regardless of the potential outcome.
Senator Carstairs: Ms. Ruth, with respect to the length of the palliative care benefit period or compassionate care benefit period, when the legislation was originally written, it was hoped that it would be 10 weeks, not six weeks. Quite frankly, that did not pass cabinet so it became a six-week benefit with the view that if we were able to get our foot in the door we would then be able to open it up. If one goes back, the original maternity benefit was 13 weeks and then became 26 weeks and then 52 weeks. There was reasonable hope that the six weeks would gradually increase. Unfortunately, it has not increased since it was introduced in 2004.
What do you think is a realistic amount of time to which someone should be eligible, given that the sickness benefit that would be available to you, for example, is 20 weeks, as an employed person? What do you think is reasonable for a compassionate care benefit?
Ms. Ruth: There are a couple of things. Childhood leukemia survival rates are up to 90 per cent. Protocols are things that the doctors give you to follow. The doctors know how long you need to have your child away from school. For me to paint a brush and say 26 weeks, or 32 weeks, is difficult to do. It all depends on how long that child needs to be taken away and cared for. There are not enough nurses and staff to look after your child 24-7 and family members are far apart; grandparents are not always there, so that falls on the parents. I cannot give you a definitive answer, but six weeks is not enough. However, it was a great start.
At the very minimum, I think at least six months as a next step. I definitely think that would help many people to get things sorted out. Twenty-six weeks is, I believe, what you are allowed anyway. I will be frank with you: Some families have been counselled to go to our doctors and say that we are stressed out and sick so that we can be given a letter to recommend that we stop working and receive stress leave. You can take that and you can be off work, but that creates many other things, for example, the heartache to have to go to a doctor and ask for such a note. In some cases, doctors will not do it. You then have to go to unemployment to get your sick benefits. I work for an institution. If you refinance your mortgage and you have life insurance, it asks, "Have you been diagnosed with depression?" Well, in order to be off, you need to be diagnosed with depression. That could be causing an interruption in people's life insurance benefits on their mortgages and their loans. There is a whole other world out here that is happening for people.
When it comes to children, I think someone needs to talk to the medical profession. I did meet with medical association's Glen Doucet in 2004. He agrees it is a great first step.
There is so much more that needs to be done. I am speaking on behalf of the parents. This is a lot like a two income, middle-class family issue. An unemployed family or family in receipt of social assistance would not have to deal with this issue. It is the two income working families like mine that are running and have so many things that are stopped dead in their tracks.
I would like to say one more thing about childhood cancer. Because of the success of the treatments and everything that is happening, the kids are living and getting back to normal. It is a critical illness; it is not a chronic illness. People try to collapse it all into one. At least 26 weeks would be a great next step and help many people.
Senator Carstairs: Ms. Page, do you have anything to add to that?
Ms. Page: I agree. The coalition thinks that 52 weeks would be good. We asked for 52 weeks for the beginning of life. Why not 52 weeks at the end? As the Canadian Cancer Society, we think the same as Ms. Ruth said, 26 weeks in a 52-week period.
Senator Carstairs: To clarify, what they are saying is that there should be the flexibility of taking a week here and a week somewhere else, not having to bunch those weeks together. The legislation does provide for that. Since it is in a six-week period anyway, it is so restricted that if it were in a broader period of time, you could take that time. That is just for clarification.
Ms. Page: The terminology could be changed to "gravely ill," which is better than "high risk of death." When you receive a cancer diagnosis, it is 50-50 you will die. It will depend on the treatment and on how you can follow the protocol. Hopefully, only one in four will die. During that time, you have to live and pay your bills, et cetera.
Senator Callbeck: Ms. Page, would you give us more information on what you referred to as "flexibility." Tell us what you mean when you say it has to be used within what period of time.
Ms. Page: I can explain. I will use my family experience. There are eight children in my family. When my father received his diagnosis of cancer, the physician said he would go to palliative care and probably live for six months. One month later, he died.
How can eight children share the compassionate care benefits? There are too many of us to share the six weeks. Personally, I am certain that I could not provide care for all the weeks. It would be easier for both my employer and me to take off two or three days a week. My brothers and sisters could have taken care of the rest of the time. That is what I mean by flexibility. It would be better for my mental health.
Senator Callbeck: You cannot do that.
Ms. Page: No. I can use a week, my sister another week, et cetera.
Senator Callbeck: It has to be at least a week.
Ms. Page: Yes.
Senator Callbeck: Dr. Harlos, you said you had some thoughts on how this might be addressed. Senator Carstairs asked you about the words "gravely ill." Is that what you were going to suggest, or something else?
Dr. Harlos: It was actually something a little bit different. It seems that one of the barriers, at least to the access of this benefit, is the issue of understanding what the trajectory might be for this condition. It is being able, both on the physician side, as best as possible, to give a prognosis, and on the family and patient side, to have some understanding of that possibility and maybe some information. I am speculating about opportunities.
There is an initiative with which you may be familiar called the Canadian Virtual Hospice, which is an online resource related to palliative and end-of-life care. It is popular. We receive about 1,000 hits a day. We respond to queries from clinicians, families and patients. I thought an initiative we might try to pursue at the Canadian Virtual Hospice was to provide information for patients and families about the benefits and to provide them with a framework to speak with their doctors about prognosis; basically some information, much as we have for pain or other issues.
The second issue was CPAC, Canadian Partnership Against Cancer, which is unfolding an educational initiative. That again may, in partnership with the CVH, be more accessible to physicians in order to improve their prognostication skills.
Senator Callbeck: If the legislation were changed to include "gravely ill," do you feel that would make it easier for parents and for doctors to sign?
Dr. Harlos: Yes, I think it would. There would be fewer people hung up on the acceptance or acknowledgment of dying, as was expressed by Ms. Ruth, how her child has done well. That should not punish a parent, loved one, family member, from being able to take the time to care for a child, who very well could go to a less fortunate outcome.
Senator Callbeck: Ms. Ruth, thank you for sharing your story. It is great to hear that your daughter is doing well. I look forward to reading your article. I agree with what you are saying.
Ms. Ruth: Thank you. I am representing most of the middle-income families in Canada, and the stories are all the same.
Senator Callbeck: Thanks for coming.
The Deputy Chair: Ms. Page, if I may ask, I am interested in going back to the statistic that you were expanding on with Senator Di Nino, that one in two persons are facing terminal cancer today as distinct from one in three. You indicated that perhaps the cause is an aging population.
Are pediatric oncology cases holding?
Ms. Page: It is all kinds of cancer, not necessarily only pediatric. I am not sure if I have the data separating pediatric and other forms.
Senator Di Nino: This must be one of the most heart-wrenching subjects to talk about. I do not think there is anyone in the world, certainly no one around this table, who has not had to deal with this. Ms. Ruth, in your case, at least, you got a happy ending, which, from what I understand from the statistics, does not happen all that often. It is one of those very difficult issues.
Let me direct the first question to you, if I may. You realize that we are dealing with a bill that has set certain provisions to change some laws. I think you said it is a good first step. If I understand you correctly, I think you also suggested that it would be great to have the six weeks extended to something more reasonable, in your opinion, and probably our opinion as well, a longer period of time.
Ms. Ruth: That would be for parents of children.
Senator Di Nino: Unfortunately, in this bill, we cannot do that.
Ms. Ruth: That is fine.
Senator Di Nino: I hope you understand.
Ms. Ruth: I absolutely understand.
Senator Di Nino: Any increase in benefits requires what we call Royal Recommendation, expenditures of money. That is not a prerogative of a committee. It has to be done by the government.
In the sense of trying to improve the lot of those who are unfortunate enough to have to deal with this, can you suggest any recommendations we can make to the government?
Ms. Ruth: I know this is about extending benefits to the self-employed. I agree with that, as I already said. That is a great step, if it can happen. I believe that you can extend the benefits through an order-in-council.
In December 2005, Health Canada issued a report that made recommendations to the compassionate care leave. One recommendation was to treat cases that involved children differently and possibly extend the length of time, and one was to open up the definition of compassionate leave. That has already been done. More people can access it. How to bring it forward? I would think telling the truth as far as asking more parents if they need more support.
Senator Di Nino: Ms. Page touched upon this in a response to one of the other questions. She mentioned that the care period can be shared among eligible people, two sisters, a brother and a sister, and some lucky families may have six different members. It is important. I am an only child, and my mother is 93 years of age. I wish I had a sister and a brother who I could lean on from time to time, although my son and my daughter are wonderful. Is that something that would be useful and used and of some value?
Ms. Ruth: It would be difficult to split six weeks because of the continuity of care. If you are in the hospital for up to six weeks, you need to be there. One parent should be present to know the routine, because the routine needs to be followed. Breaking it up into three weeks at a time is not realistic. If the care period were longer, definitely breaking it up and allowing either spouse to take it would help. Maternity leave is 52 weeks. You have parental leave now, and men can take it. We have a society already built on two income families and access. That is what needs to be done here.
Senator Di Nino: Doctor, you gave us a few ideas about how to improve the services. You mentioned the use of the Canadian Virtual Hospice and the Canadian Partnership Against Cancer.
Both are educational tools, if I understand you correctly; is that so?
Dr. Harlos: My thoughts were simply that one of the many challenges with the benefit is awareness of and access to the benefit, often based on limitations in being able to figure out when the final phase of life is. I would point out that although even attending to the different rates of cancer, the lifetime risk of dying remains one each. Whether it is from cancer, Alzheimer's, or other problems, it is still a compelling issue.
Senator Di Nino: I was just trying to see how we could incorporate it into a report, other than just commenting when we make a presentation in the chamber that these two programs could be useful. I am not sure how it fits within this legislation.
Dr. Harlos: Yes. I accept that. My thoughts were off the cuff, and I have not even explored them with the people involved. I always try to think of possible solutions.
One issue that comes up, particularly in adult palliative care, has to do with the precipitous late referral because of that lack of acknowledgment of the dying phase or lack of prognosis. It is not rare that we have people who die within a week or two. I am wondering if there is any opportunity with this legislation to have the upfront access logistically easier because of the paperwork or if that two-week waiting period can be looked at in a different way. It is not rare where families hear, "I am really sorry, but he has a week or two to live." For example, it could be from a big stroke that now there will be a precipitous progression towards dying. That is one consideration I put forward.
Senator Di Nino: We should certainly look at that. We can perhaps look at that through the regulations that are prepared to go with every bill.
I want to make a comment as a way of recognizing the great contribution that our colleague Senator Carstairs has made to this issue. She has been a champion about this for many years in the Senate. I am sure she will try to work with you and with us to see if we can find some way to assist you, because it sounds like it is a very good idea.
Ms. Page, the legislation dealing with the six weeks mirrors the existing legislation under the Employment Insurance Act. Is that your understanding as well? It is exactly the same thing. It treats the individuals who would be covered by this legislation exactly the same way as the other individuals who would be taking advantage of it in the existing, current legislation of the EI bill. This is an addition or an amendment to that legislation, although it is a bill in itself. My understanding is that it is exactly the same provision as in the main EI bill for those who are working and paying premiums through their contributions, et cetera. Are you familiar with that?
Ms. Page: I would say yes. They need the same thing as others.
Senator Di Nino: Ms. Ruth, are you also of the same opinion? I believe this is the case. This is a huge bill. I am just trying to see if you can verify that.
Ms. Ruth: From what I understand, when I read this bill, it will give self-employed people the same access to EI benefits as an employed person like me.
Senator Di Nino: Including the compassionate care.
Ms. Ruth: Including the compassionate care, which is very important.
Ms. Page: I think it was only for the special benefits. Maybe I am wrong, but I think I read it was for all the special benefits, sickness benefits, maternity leave and compassionate care benefit, not necessarily the general EI benefit.
Senator Di Nino: No. It is the same as under the EI legislation.
Senator Carignan: This issue is of particular interest to me. Ms. Page, I have a technical question for you. I was recently appointed to the Senate, and I was wondering if you had the opportunity to look at members' biographies. I was the caregiver for my father. We were six boys, and I was the one chosen. I became the orderly; I probably had some transgressions from my youth that I needed to be forgiven for. So I won the draw. I experienced some very touching and unusual moments.
Under the existing legislation, is it possible to accumulate benefit periods? For example, I would do six weeks and my twin brother would do the other six. Is it for a single period of time only?
Ms. Page: It is a single six-week period.
Senator Carignan: A period intended for just one person?
Ms. Page: It is a six-week period for one person who is ill. If there are 12 of you, too bad for you. If you are an only child, like Senator Di Nino, you are lucky —you have the entire six weeks.
Senator Carignan: The same thing goes for the spouse. Have you looked at improving this measure?
Ms. Page: Improvement would mean extending the time period during which the person receives benefits, and that is what we are asking for because six weeks is not enough.
Senator Carignan: For example, have you studied the possibility of splitting the six weeks between several people?
Ms. Page: No, we did not. In any case, since six weeks is not long enough, technically speaking, that would mean extending the period during which the benefit can be received to either 26 or 52 weeks. That would allow for better sharing and more flexibility.
Senator Carignan: Have you assessed the cost of such a measure?
Ms. Page: The Canadian Cancer Society has, but not the coalition.
Senator Carignan: And what would the cost increase be, according to the Canadian Cancer Society?
Ms. Page: I will take note of the question and send you the information.
Senator Carignan: That information is important to us because, as Senator Di Nino mentioned, we cannot move amendments that give rise to costs. But, before reporting back and moving amendments, we would like to have all of the information.
Ms. Page: I will send the information to the members of the committee, on behalf of the Canadian Cancer Society.
The Deputy Chair: If you could arrange to send that to the clerk, he will ensure it is circulated to all members of the committee.
Ms. Page: Yes, okay.
Senator Carignan: My second question is for Dr. Harlos. You spoke of changing the definition to "gravely ill." I understand that you want to remove the notion of death or the morbid nature of an illness.
Broadening the definition to "gravely ill" could result in inconsistencies. If that is the criterion, it may not be objective enough. I will give you an example, once again, from my own family. My godson is certainly gravely ill. He has undergone multiple surgeries, and he does not have a life-threatening illness. But his support team will tell you that he is gravely ill.
For a family member, subjectively speaking, the meaning of "gravely ill" can be very broad. Have you studied the subjective aspect of the term "gravely ill," which could complicate the doctor's opinion even further?
As it is already difficult enough to identify a person as suffering from a life-threatening illness in the short term, do we not risk making the situation worse and creating more frustration for families who feel their child is gravely ill because he or she has broken both legs.
Do you not think that "gravely ill" might result in an almost arbitrary broadening of the definition, to some degree, one that will depend on either the doctor or the person applying for benefits?
Dr. Harlos: This is what I see all of the time. In my view, listening to Ms. Ruth describe her experience with her child, there was a period during which her child's life was threatened for an extended period of time by the condition and by the treatments. In fact, the diagnosis of a fatal condition can only be made retrospectively in those circumstances because you can only look back on it and say, I suppose this was a terminal condition because your child did not make it through that last ICU stay, even though they made it through the preceding five.
Some conditions are different from chronically ill conditions, which are relentless and progressive and are marked by episodes of a threatened life. It is almost impossible to say whether they will make it through. It could be a child with a cancer or a child with a respiratory condition.
I would make a distinction in the definition. I would think there would have to be an accommodation for a "threatened life," as opposed to a serious illness where there is an injury.
Arguably, again, to echo what Ms. Ruth said, compassionate care is a broad concept and even one could argue that that is so broad it risks spreading and being misused.
For example, in the case of one of our parents falling and breaking a hip, there are many households where one of the parents has dementia and the other is his or her frail caregiver. If the caregiver falls and breaks a hip, there are two choices. They are both admitted to hospital, or someone takes two or three weeks off work to provide compassionate care to the spouse left at home. I agree that scenario extends it beyond the initial intention and scope of the compassionate care benefits.
I support Senator Carstairs' intent to broaden it and I do not think it would make it more difficult for physicians. Physicians have a difficult time saying someone might die. It is frustrating that that often leads to missed opportunities and a non-acceptance of end-of-life. I think we will acknowledge most of time that this is a seriously ill, gravely ill or critically ill adult or child. It is almost as if the current benefits require a commitment to dying. That is very hard to do on anyone's part.
Senator Carignan: When you talk about "gravely ill," do you admit that you are talking about a serious threat to the person's life?
Dr. Harlos: Yes. Again, I think the assessment or the diagnosis or the acknowledgment of a threatened life is easy to make. It is not something that physicians would stumble over, or very often parents would not either. They know it is scary. They know that things can go either way. However, I will give you a brief example of a family needing to acknowledge a terminal phase.
Our family went through this two years ago when my father-in-law died. He died in Edmonton. He has three children, one in Winnipeg, who is my wife, one in Vancouver, and one in Campbell River. All of them were eligible for the compassionate care benefits, but his situation was so unpredictable that nobody availed themselves of the benefits because they wanted to save them so that when it came time to when he was really dying that people could have time with him. The trouble was that, as is commonly the case, there was a slow and relentless decline and that last phase was precipitous. It was kind of like falling through ice that is cracking beneath your feet. Not one family member took advantage of that benefit because of the difficulty in acknowledging that yes, there will be death within a certain number of weeks. Very often, when it happens, the last little bit happens kind of out of the blue and you miss that chance.
Senator Carstairs: I thought it might be useful to provide a couple of pieces of information.
In terms of the original drafting of the bill, it was to be six weeks for one person and one person only. It was thanks to the bureaucrats at HRSDC that their creative wisdom came up with the idea that in fact it could be one week for six different people or a combination of those things. It is about as flexible within the six weeks as it possibly can be. The problem is it should be more than six weeks, in my view.
The second element that I believe is extremely important for the members of the committee to understand is that the uptake of this particular provision has always been much less than has been budgeted for. When it was originally introduced, we thought it would be many millions of dollars. It has never been that kind of a program in terms of what it would take. It is because of the problems with the definition, as well as the problems with the duration of the time, that there has been such little uptake on this particular provision.
The Deputy Chair: We are almost at the end of our time. I must say, as a concluding remark, I have had the great honour and pleasure of serving on this committee for almost a year now but I must say that this is truly one of the most unique meetings that I have attended in the sense that I do not think I have ever been present where witnesses and members of the committee have shared personal experiences more than they have at today's meeting.
Certainly, on behalf of all members of the committee, I would like to express our appreciation to our witnesses. You have been truly exceptional, clear, focused and most informative in your message. We thank you very much, and to you, Dr. Harlos, for attending through the videoconference.
Dr. Harlos: Thank you very much.
The Deputy Chair: This meeting is adjourned.
(The committee adjourned.)