Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

An Interview with Carleen Brenneis, RN, MHSA

In the following interview, Carleen Brenneis, RN, MHSA, program director of the Edmonton Regional Palliative Care Program, comments on how patients' quality of life is assessed and promoted through an integrated program of palliative care services in Edmonton, Alberta, Canada. The interview was conducted by Karen S. Heller, PhD, associate editor of Innovations in End-of-Life Care. [Citation information: Brennais C. Addressing quality of life at the Edmonton Palliative Care Program: An interview with Carleen Brennais, by KS Heller, Innovations in End-of-Life Care, 2000; 2(6), http://www.edc.org/lastacts/]

How would you define quality of life?

Quality of life is a fairly complex construct. The term itself is really a middle class term, and I don't find it very commonly used by our patients. When we started to develop the Edmonton Symptom Assessment Scale (ESAS), we had quality of life as one of our indicators.1 This indicator was hard to explain to patients because quality of life really involves all the components of your life: how you are doing physically, socially, emotionally, spiritually, and so forth. So, it was very hard for people to answer. We then moved toward asking them about their feeling of wellness or well-being, and people seemed to understand that better. So, I think "quality of life" is a health care term, which we health care providers use in talking amongst ourselves, but we don't tend to use that language when talking to patients or clients.*

We use "well-being" to refer to the individual's overall comfort, both physical and psychosocial. When people truthfully respond to the question, "How are you?" they are describing their well-being. We ask patients to describe how they are doing as a whole person: body, mind and spirit. That begins to answer the question with respect to some of the components of quality of life. But it seems to be better understood than saying, "How is your quality of life today?"

One of the most important components of our program is that we expect that asking about a patient's well-being will be a regular part of our discussions with patients. We operationalize the concept of "quality of life" by expecting clinicians working in any palliative care setting in the Edmonton area to ask the questions on the ESAS. These questions open up the opportunity for people to tell us how they are doing. Quality of life is really a temporal question as well: "How are you doing at the moment?" Yesterday, one of our staff told me, "You know, I just asked one of my patients that question and he said, 'I just had the most wonderful bath, it was great.'" He might answer the question differently with respect to different time frames—that moment, that day or the rest of his life.

How frequently do you ask patients these kinds of questions?

Patient control and choice are very important in all our philosophies of palliative care. The most effective way you can give patients control is by asking them how they are doing, and by asking them what is important to them. Our expectation is that when a nurse goes into a patient's room in the morning, she says, "I'm with you for the day. What's important to you? What do you need today? How can I help you?" The same expectation applies when the occupational therapist and physical therapist go in. We are beginning to look at what each specific discipline has to offer in palliative care. Palliative care is really driven by the patients' wants and needs, more so probably than in most areas of health care.

How do you assess well-being and address quality of life needs for home care patients?

We use the same tool, the ESAS, in the home, in hospice, in the Grey Nuns tertiary acute care unit. Thus, when we are referred to patients, we all use the same language and we have the same expectations. Interdisciplinary staff provides palliative care in each setting. Each profession (physicians, nurses, occupational and physical therapists, social workers, chaplains) addresses different components of quality of life. We conduct family conferences to ensure that all members of the health team, which includes the patient and his or her family members, agree on the goals of treatment. Family conferences involve the patient, family, and appropriate staff such as the family physician, social worker and home care staff, if preparing for discharge. The patient and family are the unit of care, so we try to address the family's quality of life, at a given point in time.

How do you assess the family's well-being and life quality when a loved one is dying?

When the family is part of the unit of care, it is very important to know how family members are doing, particularly in the home, where they are the primary caregivers. Part of our assessment is finding out how the family is doing. We do not have a set of assessment questions for the caregiver, per se. We have tried different ways of gathering that information, but have not yet found the right mix of questions. In the home, however, it is critically important that you ask the caregiver the same questions as the patient. We also talk to families about what their goal is – are they thinking about a home death? We know through some of the research we have done that if you are going to have a home death, the caregiver and the patient need to agree; if one or the other does not want a home death, of course, it is not going to work.

What kinds of concerns do families bring up when asked about their quality of life?

The Palliative Care Association of Alberta, of which I am a member, recently wrote a caregiver guide that is responsive to the needs identified by people in our province. We did it by asking the home care nurses of the province, as well as patients and families, "What is important, what do we need in this manual?" By and large, their comments reinforced the importance of meeting patients' physical needs first. This is consistent with Abraham Maslow's hierarchy of needs, which posits that you need to meet people's physical and social needs before they can focus on their emotional and spiritual needs.2 We hear that time and again from the families, patients, and our own staff. We hear from patients, "You need to deal with my pain, with my physical discomfort." That may not be the most important thing for their quality of life, but in order for them to deal with their emotional and psychosocial issues, you first have to deal with those physical issues.

We also hear repeatedly that caregivers want information to enable them to help with the patient's physical and psychosocial needs. They want to know, for example, "How do I help turn the patient? How do I help in other ways? Whom do I call if I need help?" Safety is so important in the home. Families need to feel that help is a phone call away. All of these pieces are part of quality of life.

Have you defined the concept of quality of life for your program? Do you feel you are all speaking the same language when you talk about that?

I think the core dimensions of quality of life (physical, psychosocial, existential, and spiritual) are explicit in our mission and objectives. We still have tremendous work to do, particularly in the psychosocial area. Research in the psychosocial area is difficult. We've done some work on hope and we regularly review the literature in this area.3

Do you think that increasing access to palliative care services contributes to improved quality of life near the end of life?

Access is one indicator of quality of life, because it is a component of a person's social situation. If patients feel that their needs are being met, if they have options in terms of location of care, if they feel they have choices that they understand—all this adds to quality of life because people then feel that they have some control.

We measure and record "access" at a consultant's level. So when we say we have 91 percent access this year to palliative care services, we mean that 91 percent of the cancer patient population has received a palliative care consultation. The consultation involves a full palliative assessment, which includes asking about all the different areas of quality of life.

Is one assumption underlying your program that quality of life in the acute care setting would not be as good for dying patients as it would be in hospice or at home?

Yes, although care in acute care settings can be excellent, the focus of care is to meet acute care needs and discharge patients when they no longer need that level of care. We assume that people would prefer to be at home or in a community setting, such as inpatient hospice, rather than in an acute care hospital. We also believe that patients can receive excellent palliative care in a community setting or at home. Patients need acute care when they need the diagnosticians and enhanced nursing care. For basic palliative care, however, 90 percent of care can be provided in the home, according to Derek Doyle.4 We need to provide those services in the home or community setting. One of the goals of the program was to decrease the number of cancer patients dying in acute care settings. In fact, 87 percent of patients suffering from cancer were dying in acute care settings in Edmonton before this program began. Presently, 40-45 percent of patients with cancer are dying in acute care settings. More patients in the final phase of life are being cared for in hospices and at home.

One of the things that we emphasized was that if we were moving care to the community, we needed to transfer resources there. Behind this transfer of resources is the belief that you cannot simply move people out of acute care and call it palliative care; you need to provide the resources to do that care. Those resources consist primarily of nursing, with access to medical and interdisciplinary teams. So, we enhanced our home care service and created an enhanced service system in hospice. Continuing care facilities were funded for enhanced nursing, interdisciplinary care and medication, so that they are really more like institutional hospice settings.

How are hospice and palliative care funded in Canada?

All our funding is centralized. We are a regional program within the province of Alberta, and so the community and acute care funding are all combined. Service is need-based, so if you need home care, hospice, tertiary or acute level care, provision of a given level of service is based on the assessment of the consultants and nurses in the program for what level of care you need. Our criteria for entry to inpatient hospice care is based on an expected two-month length of stay, but if someone needs it for longer, there is not any cutoff point. It is not funded that way at all.

What kind of help are people getting through the Edmonton Palliative Care Program overall, how much and on what level?

As people come into the program, they may receive a few hours of care a week, which increases as the patients' needs require. A person can get 24-hour care in the home near the end of life, but we would not provide 24-hour care for weeks and weeks on end. There is an expectation that the family caregivers are helping out; however, we do have to watch for caregiver burnout. If someone has absolutely no family, it is very difficult to provide home care. Lack of a family caregiver is a common indication for people to come into a hospice setting. I am not able to give you an average number of hours of home care, at this point, because we are just getting the palliative home care database up and running, but we try to meet the needs. In Canada, acute care services are all under Medicare; home care is not. Home care is organized in various ways throughout Canada. It can be different from province to province, even region to region, at this point. In our region, palliative care professionals work within home care, which is part of our overall health care system. The nursing and interdisciplinary services are part of the home care program, and we have other agencies we contract with for the licensed practical nurses and palliative personal care attendants.

What is the size of the population in your catchment area?

In the region served by our program—Edmonton and the surrounding suburbs, including some rural areas—there are 840,000 people. To drive from one end to the other of this region would probably take two and one-half hours in one direction and an hour and one-half in the other. The visiting team covers quite a distance, so we broke the team up to cover quadrants of the city. The visiting team includes four physicians and four nurses. Part of our community team (at least one nurse and one to one and one-half physicians) provides consultation to the hospices. When a person is admitted to the continuing care unit hospices, there is an automatic consultation to the team, following which we are only involved as required. But we do provide advice and attend conferences on a weekly basis.

What kinds of diagnoses do your patients have?

Of all the patients seen last year, 92 percent had a primary diagnosis of cancer. Like most palliative care programs, we started out based on an oncology model, and then slowly we have begun to bring in patients with other diagnoses. In 1999, there were 1,400 cancer deaths in the Edmonton region. The palliative care program provided care to 91 percent of those patients.

A hospice is not necessarily the right setting for patients with other diagnoses all the time; however, there are some patients with congestive heart failure, chronic obstructive pulmonary disease, amyelotrophic lateral sclerosis, which fit very well in the hospice model. But it's not the right setting for all patients, some need to remain under the care of their specialist. If you look at the "mixed" model that Linda Kristjanson talks about,5 sometimes it is most appropriate for patients with a particular diagnosis to be seen by palliative consultants in that particular specialty area. In a setting that serves a small number of patients suffering from AIDS, for example, it might be very fitting to do that. So we tend to visit patients with AIDS or nephrology patients wherever they happen to be.

We have good relationships with other disciplines; they come to our city-wide palliative rounds and describe what they are doing in palliative care. We talk with one another about what their needs and ours are and how we can work together, so we are building those bridges over time.

Could you give me an example of how somebody would move from one palliative care setting to another?

No matter where you are in the region, you should be able to access a consultant. If a patient is at home and the home care team and the physician feel that the patient needs higher level care, they'll call in a regional palliative care team and a nurse or physician will go out and visit the patient, and gather all of the information. We always do it with the approval of the family physician or attending physician, because as consultants, we are not providing the primary medical care. The family physician is the primary physician and we come in and consult to that person. We want to make sure that the primary physicians are supporting whatever we are doing. If we do visit a patient in the home, and suggest some changes of medication, somebody has to provide orders. So we work very closely with the family physicians or the attending physicians wherever they are, to make sure they know we are coming in and agree. In our latest satisfaction survey of the family physicians, we learned that this approach is working. Once we go into the home and assess what level of care the patient needs (usually it fits exactly with what the family physician and the home care nurses are telling us), we would then triage the needs. We have centralized access to our 57 hospice beds, so the consultant provides information to a hospice triage nurse (one of our 4 nurse consultants), who decides what level of care is appropriate. If a patient is at home and requires an inpatient hospice bed, that person would get the available bed before someone who is already in acute care, because the person in the hospital is already safe. So we always are triaging based on the greatest need. If we go in and we see that the person needs tertiary level care, we would talk to the physicians on the tertiary unit, and if the family physician agrees, we would move the patient to that site. So the consultant who assesses the patient, be it in acute care, at the tertiary level, in the home or in the hospice, also accesses the other levels of care.

When the patient is dying at home, who does the family or patient call if they have questions – their own family physician or someone on your palliative care team?

Families and patients would call their own physician or a palliative home care phone number. When a patient is served by home care, the patient can call a centralized number for all home care patients. This number has 24-hour coverage, with a palliative nurse on call at all times. It is extremely important that patients feel safe at home. Persons, particularly near the end of life, need constant assessment, they need to feel they can call in anytime and get expert answers. There are nurse and physician consultants on call 24 hours a day.

If the family caregivers start to burn out, do you have respite care?

We do some respite care in the hospices. There is some respite care available in the region generally; it depends on the level of care the patient needs. Home care does most of our respite care. If the family needs a break, if they have a big event to go to, rather than move the client out of the setting, we will try to provide respite care in the home. Again, access to this service is needs based.

What aspects of quality of life do you feel you do best in addressing and which you would like to work on more?

I think what is really important is the balance. Like most programs, we are very good at talking to the patients about where they are at and what is important for them. Our program is known to be fairly strong at addressing the physical needs of patients and we are able to monitor how we are doing in that area through all the ESAS assessments that we use throughout the program. We enter the ESAS scores into the database, so we can complete audits and monitor how well we are meeting patients' needs. We did an audit of our home care services, in which we looked at whether anything was done if the ESAS score was more than 5 out of 10. [Higher scores indicate worse symptoms.] If so, was the family physician aware of this problem? Was the family physician treating the problem? Were there changes in the medications? Our audit demonstrated that we do well at talking to people and assessing their concerns.

It is harder to address quality of life when you are looking at what we call a "black" ESAS, which means that you are not looking at the scores on specific symptoms, such as pain and nausea, but rather across the board at all the symptoms, and the scores are all high, so that the bar graph looks black. If people are not doing well on many of the ESAS indicators, for example, the person has depression, anxiety, drowsiness, is missing that feeling of well-being, and is experiencing pain, then this person is probably suffering. When you are dealing with these multidimensional components, that is when the consultants are called in and we talk about possibly moving the patient to the tertiary palliative care setting and providing further support.

What improvements are you still seeking to make in the services you provide to address quality of life?

We would like to have a psychologist available in the community. Right now, to have a psychologist available, people need to pay for that service. We have access to the psychologists at the Cross Cancer Institute, who are excellent, but they don't leave the building, so if we need help in the home and people are really ill, we have a bit of a gap. That is one area in which I think we can improve.

I think there is always work to be done to improve the area of psychosocial assessment. Although we report psychosocial indicators on the ESAS, it's going to be years before we really understand how to interpret them completely. For example, we looked at the areas of depression and anxiety; those indicators need to be reported to the physician, they still need to be discussed. It is harder to audit the follow up on these measures objectively using a chart review process. We did look at whether things were being done or not, and we found that in the psychosocial area, it is harder to determine. You can treat and talk with people who have depression, but you may not change it. If someone is depressed coming into his or her situation of life-threatening illness, you may not be able to change that. So, it's a little bit tougher to know what impact we may be having in that area.

Considering ways to improve more broadly, we need to look ahead. Right now, our model and our care work well, but it is not going to look this way two, three or five years down the road. We have an older population and we are expecting a 56 percent increase in the numbers of people needing palliative care in the next 11 years, so we need to plan now for how we are going to deal with the workload. So that is our biggest challenge. We have good options for patients now, but how do you meet the growing needs of an aging population?

When people are unable to report how they are feeling and you need to turn to someone else to speak for them, do you feel as confident of the kinds of assessments you are making, or that you are able to meet their needs?

You do not know exactly how the patient is feeling, but we still will do an assessment based on the caregiver and the staff's input. We try to deal with cognitive impairment by regular assessment and really watching for delirium and treating when appropriate. If you want people to make choices and to be involved in their care, they have to be awake and aware to do that. You need to listen to what the person tells you. When a person cannot tell you how they are doing, we do ask the caregiver and staff to assess, and we may use an assessment tool called the Edmonton Comfort Assessment Form (ECAF), which asks a caregiver and staff to assess comfort. This tool was initially named the Edmonton Discomfort Assessment Form, but has recently been renamed.

Are there appropriate community-based services available everywhere in the region for people to access? For example, for spiritual support, are the churches involved? Are there community volunteers?

We have pastoral care, chaplains, in hospices, acute care settings and the tertiary unit, and we count on the community to provide this kind of support. We encourage people to be involved in their own support systems, religious or not. I think there are different levels of access and certain families are more connected with the community than others. We create a bereavement resource list every year and we connect with families by telephone after the patient's death to make sure that if they want further information, we can provide it to them. We try to identify families who are not well-connected in their communities ahead of time.

How does the Edmonton program delimit the scope of its responsibility for ensuring patients' and families' quality of life?

We do not get a score of less than 5 out of 10 using the ESAS tool on every patient. We do the best we can. You usually can only bring someone back to where they were before they had a particular symptom, if you are able to control it. You are not going to fix everything. Particularly on the tertiary unit, where we have some very difficult situations, we talk to the staff about the fact that we can only do so much and then, when we have done everything we can, we journey with the patient. We don't desert them, we provide support wherever the person is, whether it is in the home or the tertiary care unit.

Patient autonomy plays a role, too. A patient may choose not to be connected with services, or not take a particular medication, particularly when in the home. We need to provide information and support, but a person has a right to choose to follow our suggestions or not.

How do you see that the nursing role contributes to the patients' quality of life, as distinct from the physician's role on this team?

There are tremendous nursing needs when people become physically debilitated and emotionally stressed; the nurses need to be in there completing the whole nursing process, coordinating care, bringing in the other disciplines, or filling in for them when they are not there 24 hours a day. So palliative care requires the full nursing process from assessment, coordination and collabortation, direct nursing care, and ongoing evaluation with the patient and family of the care provided. Advocacy is a well-established nursing role and very important in palliative care. The nurses conduct the ESAS. From a nursing perspective, it's a very fulfilling, very rewarding area to work in because you need to use all your skills.

How do you promote cooperation and a sense of common mission across care settings?

Insofar as we are not funded per patient in Canada, there is no competition for patients among care settings. As far as working collaboratively, and making sure patients are in the right setting, that is the role of the regional office. We have a philosophy of care that says people need to be at the right setting at the right time, and we have criteria for admissions for all the different areas. And when patients are at the wrong place at the wrong time, we talk with everyone about how we could do better the next time. So we have a strong common goal and vision, and because we are a regional program, I have access to acute care hospitals, to the community, to hospice, and to the continuing care community. We cross all the borders, which makes a huge difference in our ability to meet patients' needs. And the goals and visions are shared and agreed upon at the top levels of continuing care, acute care and home care. In addition, this shared vision is reinforced by matrix reporting. In our setting everybody does not report to this office —home care personnel report to home care, hospice staff report through their continuing care management, acute care staff report there, but they have a responsibility to this office, for their outcomes, their quality of care, and their standards of care. Another aspect of this is that if I wished to advocate for increased funding or more staff in a certain area, I would identify the needs, communicate them to the people who make those kinds of decisions in that particular setting, and if approved, they would then hire staff. So, it is a constant balance. That is why we do look at where patients are over time, for example, how many patients are dying in acute care settings vs. at home and so forth, because it is all part of the picture of how we are doing as a palliative care program. So, we try to collect that information and share it with the administrators in the different areas, to help them understand the big picture.

What kinds of barriers have you faced in getting things accomplished, if any?

I think the biggest barrier for any palliative care program is to make sure you're all talking about the same thing and that comes through developing and refining your goals, your vision and your language. For us, probably one of the hardest barriers is getting a common language and agreeing to do things alike in all the settings in which we provide care. Getting staff to do the ESAS everywhere entailed tremendous work in the beginning. All our staff members think they ask these questions, and that they provide palliative care, but if the staff is not assessing symptoms in a constant way and in a way in which we can all communicate with one another, the team may not be helping the patient over time. Palliative care specialists need to communicate the information to the family physician in a ways that help him or her make a difference for the patient. So, in the beginning and still, in areas of acute care, the greatest barrier we face is finding a good common language, common definitions, and common philosophy. We need to find this language to move ahead and be able to describe palliative care to other health professionals, and to communicate with our clients and the public so as to improve their understanding of what palliative care is.

Right now, many people have a lot of questions: What does hospice vs. palliative care mean? Are they different? The public understands hospice care better than palliative care, but what do they understand about hospice care? Is hospice care tertiary level care? Is it care in the home? Does the word "hospice" imply a setting? My personal belief is that hospice is a philosophy, but more, it is a setting of care. Now in the United States, you have a different answer. I believe that we need to find a term, be it palliative care or end-of-life care, which describes it all in a language that is uncomplicated and clear to the public. We need to present a clear concise vision of hospice/palliative care. If the end-of-life community does not begin to present a common picture to administrators and to the public, how are we ever going to move end-of-life care ahead? It is crucial within our own community, let alone internationally, that we begin to articulate what palliative care is in plain language to the public and to other health professionals.

In Canada, palliative care recently became a subspecialty within medicine and we are heading in that direction now in nursing, as well. It is probably at least five years away yet, but it is coming.

The Canadian Palliative Care Association is doing very powerful work by articulating 13 basic principles of palliative care.6 We are just finishing that consensus work over the next year. I think that will be very helpful in beginning to articulate what hospice and palliative care really are.

In 1995, there was special Senate report issued entitled "Of Life and Death," which was primarily driven by euthanasia and assisted suicide.7 The report concluded that before you can address euthanasia and assisted suicide, you need to ensure that the principal elements of palliative care have been offered to patients and families. They did a review this year, spearheaded by Senator Sharon Carstairs, and the unanimous recommendation was that palliative care needs to be offered throughout Canada.8 This Senate report, issued in June 2000 is really increasing the focus again on palliative care and increasing pressure on all levels of government to do more. They are talking a lot about quality of life issues within that framework.

Have you faced any barriers in terms of getting palliative care on the health care agenda in Edmonton?

Another big barrier most programs face today is getting buy-in from the people who control the resources. There are such multiple needs in health care. Palliative care competes with heart transplants, waiting lists and MRIs. So one needs to understand what is happening in the community and be able to articulate those needs to the administrators such that the administrators are able to carry the palliative care agenda forward to a table with many players. You can not expect administrators to finance palliative care just because it sounds like a good thing. There is tremendous work in program planning that needs to happen in order to create a viable program.

Simply knowing the number and location of cancer deaths in your area is incredibly powerful information. Administrators want this information. In addition, you need a champion in your region, hospital, or other setting to begin to discuss it. We had a very strong tertiary unit before the Edmonton Palliative Care Program began, but we knew that only 21 percent of patients with cancer had access to palliative care, because there were limited beds on that unit. So we needed information about the entire population. It is useful to research how your community is planning to meet the needs of its aging population. There are many ways of doing this planning. We have one model and it worked for our community because we brought in all the stakeholders—the administrators, the family physicians, the consultants and specialists, the community—and said, "How do you think we can make this work? Here's what we think would work, do you agree?" To get that level of buy-in, we had to provide the information to them to act on. So, I think a major barrier is a lack of time and expertise to pull all that information together.

What message would you like to leave with our readers about how quality of life should best be honored in practice?

I think the core palliative care program has got to be responding to what the patient wants and needs, which implies finding out what is important to each individual patient. This concept should be part of the philosophy and goals of a palliative care program.

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References:

1. See Resources and Tools page for a link to this tool at the Edmonton Palliative Care Program website.[Return to Featured Innovation]

2. Maslow A. Motivation and Personality, 3rd Ed. New York: Harper & Row, 1987. [Return to Featured Innovation]

3. Nekolaichuk CL, Bruera E. Forum: On the nature of hope in palliative care. Journal of Palliative Care. 1998;14(1): 36-42. [Return to Featured Innovation]

4. Doyle D. The provision of palliative care. In: Oxford Textbook of Palliative Medicine, 2nd Ed., D Doyle, G Hanks, N MacDonald, (eds.). New York: Oxford University Press, 1998, 41-53. [Return to Featured Innovation]

5. Kristjanson L. Generic versus specific palliative care services. Ottawa: Health Care & Issues Division, Health Canada, 1997. [Return to Featured Innovation]

6. Ferris FD, Cummings I.(eds.) Palliative Care: Toward a Consensus in Standardized Principles of Practice. Ottawa, Ontario: Canadian Palliative Care Association, 1995.[Return to Featured Innovation]

7. Canada. Senate. "Of Life and Death". Report of the Special Senate Committee on Euthanasia and Assisted Suicide." Ottawa, 1995.[Return to Featured Innovation]

8. Cananda. Senate. "Quality End-of-Life Care: The Right of Every Canadian." Subcommittee to Update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology. Ottawa, June 2000.[Return to Featured Innovation]