Innovations in End-of-Life Care
an international journal of leaders in end-of-life care
A Systematic Approach to Palliative Care
in a Hospital and Community Setting:
An Interview with Stein Kaasa, MD, PhD
Stein Kaasa, MD, PhD, chair of the palliative medicine unit at the University Hospital and professor at the medical school in Trondheim, Norway, describes the evolution of that unit within the department of oncology as well the larger context of the provision of health care in Norway. The country is divided into health regions and the University Hospital in Trondheim serves as the regional, tertiary-care specialty hospital for patients residing in the central part of Norway. Ten years ago, the government decided to create the only palliative medicine professorial chair in the country at this medical school and to locate the first and still unique palliative care unit at Trondheim University Hospital. This academic, university-based unit combines research, training and clinical work and has served as a model for others in Scandinavia. Medical students have exposure to the palliative medicine unit during each year of their training; fellows and general practitioners also spend time on the unit to receive additional training in palliative medicine. [Citation: Kaasa S, Romer AL. A systematic approach to palliative care in a hospital and community setting: An interview with Stein Kaasa. Innovations in End-of-Life Care, 2001;3(4). www.edc.org/lastacts]
A Regional Palliative Medicine Program
Describe the palliative medicine program at the University Hospital in Trondheim.
The service includes a 12-bed acute palliative care unit, an outpatient unit, a hospital-based consultation service and a home care team, which consists of doctors, nurses, social workers, physical therapists, dieticians, and chaplains. The mean length of stay at the inpatient unit is ten days, exactly the same as for the department of oncology.
What population of patients does the unit serve?
Ninety-nine percent of our patients have cancer diagnoses. We should see patients with other diagnoses, but that's not the situation right now. We admit the majority of the patients from the hospital, either from the department of surgery, lung medicine—quite a few suffer from gastrointestinal cancer — and from the department of oncology and other departments in the hospital. General practitioners in the community refer a smaller portion of our patients to the unit.
Where do patients who leave the inpatient unit go?
We discharge 25 percent of our patients to home, another 20 percent go to a nursing home and approximately 55 percent die on the unit.1 Hospice is not a word we use so much. We use the term "hospice" quite differently in Norway. It refers primarily to a philosophy of care, but can also refer to a place, but has no funding or regulatory implications. Nursing homes are the places where we offer inpatient, chronic, long-term care including inpatient hospice care.
Recently, the palliative medicine unit established an agreement to collaborate with the city of Trondheim in the care of patients at two nursing homes. As a result, we now have three beds at each of these two nursing homes; there will be four beds at each by the autumn of 2001. This new arrangement means that when we discharge patients from the acute palliative care unit who can't go home for various reasons, we can now send them to these beds in the nursing homes for longer-term inpatient palliative care. A doctor-nurse team visits the patients there once a week at least, and the long-term staff can request additional consults if they wish. The nurse also gives general support to the nursing staff. Recently, we have begun offering telemedicine teaching sessions, i.e., the staff of the nursing home participate in our teaching rounds and case discussions online, with the staff of the palliative medicine program, so that they can update their skills. In this way, other patients beyond the four in the designated palliative beds in each nursing home also benefit from this contact, as the nursing home staff can consult the palliative care team on their care as well.
How is the staff of the palliative medicine service organized?
At first, we tried to have a floating organization with staff working in both inpatient and outpatient settings. But after a couple of years we realized that that was too complicated. We now have two doctors working on the inpatient unit and two doctors working at the outpatient clinic. The latter also consult at the nursing homes, in patients' homes, and in the rest of the hospital. Five nurses work on the outpatient team. The inpatient team includes 30 nurses. The doctors rotate annually across the units. The doctors who are visiting fellows spend first half a year on the inpatient unit, and then six months at the outpatient clinic. In addition, the palliative care staff that works with patients across all settings includes one and a half positions for physical therapists, one chaplain, one position for a social worker, and one dietician.
Can you perhaps take a typical patient, if there is such a thing, describe how he or she enters your care, what you might do, and then where that patient might go?
A young patient might have, for example, pancreatic cancer, a family, and a lot of internal resources and energy to live. The patient wants to be very active for as long as possible, but has a lot of symptoms. He might have ascites. He might have a lot of pain because of the pancreatic tumor, but he wants to be at home. Most likely, this patient's oncologist will refer him to us as the care becomes complex, to offer support to the patient and family and to help manage the symptoms and home care. Quite a few of these younger patients don't want to be inpatients; they want to be outpatients. What we try to establish for these patients is a program tailored to their needs. We try to treat the patient in an outpatient setting, and if necessary, we go to the patient's home. Young patients with cancer often have children, so we spend quite a lot of time talking to the patient, the spouse and the children. So, in this example, we would focus on the symptoms and his and his family's needs. We would talk with him and his wife about the children: how to inform the children, how to bring them into the process, and how they are going to actually prepare the children for living together while the father is dying and afterwards. If the patient wants to die at home, we work with the general practitioner, and the home care nursing service in advance so that can happen.
Another example might be an 80-year-old man with, for example, prostate cancer, who's having lots of skeletal metastases, and who has a wife who is not very fit herself. This patient decides he doesn't want to be in a nursing home; he wants to either be at home or in our inpatient palliative care unit. So for this patient, we try to establish as much support as possible at home. We try to treat him as an outpatient because we have a limited number of beds in our palliative care unit. We also try to anticipate with him that he may get so sick that he can't be at home and then he would have to stay for a long time in a bed in an institution. We describe the beds we have at the nursing home and our close connection with those nursing homes, which might lead a patient to accept that option. Such a patient might, for example, come to our palliative care unit for four, five six, seven, short inpatient visits, maybe to get radiotherapy for example, or to get all types of tumor-directed treatment, and/or to get his pain treatment monitored. Sometimes we might even take that patient in over the weekend or maybe for another three or four days, to offer respite care so that his wife can relax.
In sum, we try to work flexibly with the primary health care team so that we can orient our care to the patient and family's needs across levels and settings as seamlessly as possible.
Defining Palliative Medicine: Role of Specialists
It sounds like your team plays a variety of roles with patients, from almost a primary care role to the consultant role. Can you elaborate?
We have a mixture of patients. All patients in Norway have a general practitioner. A recent change in the law has made that mandatory. In some cases there is a close existing relationship, in others less so. We are trying to classify our patients into three groups to help us best monitor and respond to their needs. We call them "A" and "B" and "C" patients, based on which health care professionals have primary responsibility for the patient's care. "A" patients are the patients the palliative care team has primary responsibility for — they are "our" patients. These cases are few, and the general practitioner has very little involvement. Then we have the "B" patients, where the general practitioner and the home care nurses have the primary responsibility but our team still has substantial involvement. Then we have the "C" patients, who have been seen by us once or twice, but we don't have any regular follow up with them. This system allows us to be clear with patients about whom to contact in an emergency.
Palliative care is more than just caring for the dying. We need to be preventive and we need to reach the patients before they are dying. Palliative treatment should not begin in the last couple of days of patients' lives. In order to implement this ideal, we need to be clear on which health care professionals are serving as the primary caregiver for the patient and family.
What do you mean by "preventive"?
By preventive, I mean prevent symptoms, prevent suffering, and give psychosocial support to the family. You cannot just do that the last three or four or five days the patient is alive. You have to know the family for a while. You have to know the patient in order to address his/her symptoms. You have to talk to the family. You may have to meet the children a couple of times and know the family before you can actually give them advice.
Do you aim to make contact with these patients earlier in their disease trajectory, i.e., doing "preventive" work and getting to know families?
It's a very good question, because it's also related to resources. When can you actually deliver your expertise best? Should we as specialists in palliative medicine have direct contact with more patients or only those with the most difficult problems? Should palliative medicine be in the mainstream, so that most doctors have some expertise in it, or should it be a specialization? My answer is a little bit of both. In the Trondheim program, we want to see the problematic patients on our inpatient unit. We are saying that we want to see the patients who are having special problems. We can admit them to our inpatient unit to get intractable symptoms under control. We can also design an individual home care program in collaboration with the primary health care system if necessary. One of our strengths is that we have a great deal of flexibility in how we respond to patients' needs. We have skilled doctors, nurses, and other health care professionals who are working together as an interdisciplinary team.
However, we also see teaching and research as crucial to our mission. We want to consult to others, demonstrate what we know and do well, and disseminate our research findings to establish the evidence base for the field, so that other physicians value and accept palliative medicine.
Ideally, I think oncologists and internists should deal with most of their patients themselves. Patients who are not suffering unduly could be managed by their primary health team or the specialists who have responsibility for their condition. But this is a two-edged sword. I do think that the palliative care specialists should be more heavily involved in symptom control and in planning care for the last months and weeks of patients' lives.
Barriers to Access to Palliative Care
In the United States we have had regulatory barriers as you know, in terms of the Medicare Hospice Benefit, which regulates who can gain access to hospice care. What kinds of barriers to accessing palliative care early in the disease trajectory exist in Norway?
The barriers are not regulatory, but we have barriers just the same. We have the same problem of patients being referred to palliative care too late in their disease trajectory. We have the same problems of denial, of physicians not wanting to "give up" on patients or transfer their care to other physicians.
We also have funding barriers to providing seamless care. I had to fight very hard from the beginning when I established the palliative care unit because doctors at the hospital do not traditionally leave the hospital. Doctors were not expected to go to patients' homes, and visiting nursing homes was unheard of, as care in that setting is reimbursed via a different budget. Three years ago, I was able to convince the politicians in the government that they should pay for doctors to go to patients' homes and to nursing homes. Now, the hospital administration approves of these activities because it now gets reimbursed for this time. At first, when we did this type of work, the hospital didn't get any income from it. The doctors are on a fixed salary, so their reimbursement has not changed with these new activities.
Did the nursing homes welcome you?
Yes. But there are also some economic barriers. Having more intensive patients in the nursing homes cost more to care for because we are asking for more expensive treatments.
The nursing homes have a certain amount of money each year, which they can use for medications. We may prescribe, for example, IV fluid, blood, bisphosphonates, and other kinds of drugs, such as antibiotics, that may be more expensive. Providing this more intensive care in the nursing home allows these patients who would have been admitted to an intensive care hospital, to stay in the nursing home. So, for the patients themselves, it is probably better, less disruptive care and for society as a whole, this care conserves resources. This change creates savings on a grand scale, but the hospital and nursing home come out of different budgets. We might ruin the entire budget for a nursing home if we discharge a patient to them, who is on some expensive drugs, and getting blood transfusions and some other drugs for, let's say, two months. The nursing homes can lobby for more money, if they can prove that they have patients who are legitimately consuming more resources, but it's complicated.
Integration of Pain and Palliative Medicine
One of the points that Dr. Portenoy made that was unique about Beth Israel and the United States was integrating the pain service and a department of palliative medicine. Is that a novel thought for you in Norway?
It depends what you define as pain and palliative care. In all palliative care programs, pain treatment is an essential component. You cannot separate them. But, from an organizational point of view, pain programs started much earlier in most hospitals than the palliative care programs.
I think during this development process, it has often been very difficult to combine them, because the pain programs in Europe are very closely linked to anesthesiology. The pain programs are not only caring for palliative care patients, but also post-operative pain, chronic non-malignant pain, chronic back pain, and so on. We have a small pain clinic in Trondheim, and they are organized within the department of anesthesiology. We are having consults together with them. We look at patients together. If we feel that we need their expertise, then we consult with them, and we have meetings regularly. We have several joint research projects, and we are training doctoral students together. Yet, we are not organized as one department. I've been thinking about this question, and there are actually both pros and cons.
Philosophically, are there reasons that these departments do better as separate?
I don't think there is a philosophical reason. However, post-operative pain and non-malignant pain are somewhat different, and if you want to be really specialized, I think it's somewhat difficult to combine them. Physicians in each area go to different types of conferences and are reading different journals, and so on.
When I came to Trondheim, my idea was that there were so few experts in this field, that pain and palliative medicine should really be combined. So, if I could make the decision in Trondheim, I think I would like to have one department including pain and palliative care. It's a little artificial to say "pain and palliative care" because pain treatment is so crucial within palliative care.
Availability of Differing Levels of Care
In some parts of the world insufficient numbers of long-term care beds, insufficient financial resources on the part of patients and their families, or the absence of family members to provide "free" long-term care have all led to patients staying longer than is clinically necessary on acute care units. What is the situation in Norway?
Sometimes we have that problem. But since we have gained access to these six to eight beds at the nursing homes, it has been much easier. Earlier, we sometimes had patients staying for several weeks on our inpatient unit.
Are six to eight beds in the long-term care settings sufficient to meet the more chronic palliative care needs of the population?
No. Trondheim is a city of more than 150,000 people. Currently, we have too few nursing home beds, and that's a big problem for the hospital in general, because there are too many patients staying in our acute hospital. For example, in the department of internal medicine, we have patients who should not be at an intensive university regional hospital. Patients' treatments are finalized, and the University Hospital can no longer add to their care, beyond what a chronic setting can offer, but the patients are not discharged because there are no beds to go to. To take care of patients suffering from cancer in an adequate way, including the opportunity for optimal symptom control and optimal palliative care in general for our cancer patient population, we would need somewhere between 15 and 20 chronic, long-term beds.
But it's not an expense problem, it's a beds problem.
Ultimately, it is an expense problem because the society has not built enough nursing home beds. To make changes within such a system takes time. Everything is paid for within the National Health Care System, including long-term inpatient care. But you cannot get that care if the beds do not exist. It is a governmental expense problem, not an individual family expense problem, except insofar as the family will have to care for the frail family member if there are not sufficient long-term beds available.
Standards of Care
Would you say that the kinds of treatments you offer and the general level of care in Trondheim is comparable to that offered in other parts of Europe or the US? Or are there cultural differences in terms of what treatments are seen as appropriate palliative care?
There are not that many acute palliative care programs including inpatient beds specifically assigned for palliation in the U.S. To my knowledge, there is one, as you mentioned, at the Beth Israel in New York, at the Cleveland Clinic in Ohio, and at the Memorial Sloan-Kettering in New York. There is a regional program in Edmonton, Alberta Canada — obviously not the U.S., but in North America.
We were very much inspired by the program in Edmonton, Canada, when we designed our program in Trondheim. Basically, the standard of care in these different units across the world is similar. We are all working in interdisciplinary teams, including experienced nursing staff. But I think that we who practice palliative medicine are still struggling with these questions: "What is palliative medicine? What distinguishes palliative medicine?"
I think that our answers are very much influenced by where different physicians are coming from. If a doctor is trained in neurology, he or she might be more interested in neurological problems; in anesthesiology, the doctor might be more traditionally pain oriented; if a doctor is trained in oncology, he or she might be more oncology oriented. One's focus depends on one's clinical training. This might explain the heterogeneity of palliative medicine, but we are quickly moving to a consensus on what palliative medicine is.
What I would like to see in the future is to really try to get an international curriculum for palliative medicine. It is needed even though palliative medicine is developing all the time.
One of the features of the Beth Israel that has been highlighted is the palliative care for advanced disease pathway (PCAD). Do you have a similar type of pathway, either as a quality improvement effort to establish a clear standard of care or a way to get people thinking about using palliative care, or referring to palliative care in your hospital?
We are in the process of establishing standards for palliative care at our program, too. I believe standards are important, but we need to be flexible in our application of them. It is a great idea to have a clear pathway or set of standards and to be able to demonstrate what clinicians are actually doing. I think Dr. Portenoy has built a remarkably good program. All physicians in the US who are interested in palliative care should know about his program and the Edmonton program established by Dr. Eduardo Bruera.
Teaching and Doing Research
I think teaching is very important — teaching in palliative care in general, and also on specific themes, both of which we do. Teaching and doing rounds are a way to increase referrals, and to spread knowledge of principles of palliative care to physicians in other specialties. These activities improve the overall quality of care in the hospital outside of the palliative medicine unit. I think they also build trust in our staff and increase requests for consultations.
It is also crucial to be onsite within the different wards. As we go there regularly we ask, "Are there any patients who could benefit from palliative care?" All these wards have their own routines. If we think that we can help them, and that we can improve patient care, this is news to them. We have to be there regularly and actually show them what we can offer, so that they see how we might help.
We need the palliative medicine inpatient unit to teach medical students, fellows, nurses, nursing students and other health care professionals. Having our own patients also enables us to do research and learn more about what the most effective treatments are and how to measure and attend to patients' quality of life. Research and teaching go hand-in-hand and reinforce each other in further establishing the field of palliative medicine.
Teaching medical students and teaching doctors is one worthy long-term investment.
My main argument for investing a lot of my own resources in the medical school is that one has to have a long-term strategy to improve palliative care. One of the problems with palliative care in general, is that in spite a lot of enthusiastic individuals, we have not been able to incorporate palliative care into the system. When the enthusiastic individual champion disappears, the palliative care effort disappears. Our rationale for teaching in medical school is to change basic attitudes toward palliative care and to improve the knowledge base of doctors within the health care system.
I think that medical doctors are extremely important as gatekeepers and role models for the health care team. When doctors accept palliative care, nurses who tend to be much more proactive are able to follow through more effectively with that care. If there is one doctor on the ward who is pro-palliative care, and thinks differently about death and dying, then it's much easier for the nurses to work within this field.
International Comparisons: Access to Care, Continuity of Care, and Funding
Can you describe how the financing of care in Norway helps health care professionals provide what sounds like good continuity of care, and perhaps make some comments about your experience in the United States?
First of all, hospitals in Norway are free, so patients don't pay anything. Patients pay a certain amount for outpatient care, and for prescription drugs, but patients with cancer or other chronic, life-ending diseases, don't pay for any medications. In the Norwegian system, everyone has an annual deductible of approximately $200 per year for prescription drugs.
I think the Norwegian system has many other strengths. First, we have a universal health care system and it is based upon at least two levels: we have the hospital level with the doctors and nurses, and then we have the community level. All patients in Norway have to have a general practitioner. When a person has a life-threatening disease and wants to be at home during the end of life, that person will have access to some home care nursing. Another strength is that hospitals and other health care settings are not competing over patients, even as we do have budgetary conflicts, such as the one I described between the hospital and the nursing homes. The system works best when different health care institutions collaborate.
Limitations of the Norwegian System
There are limitations, because the health care system cannot provide round-the-clock care at home. Patients who are severely ill have to rely on family members for care in order to stay at home. Family members can be paid their full time salary for four weeks in order to take care of a dying father, mother, husband or wife. That's usually enough. If family members need more time, it is unpaid leave at the discretion of the employer.
One disadvantage with our system might be that patients in need of specialists, for example palliative medicine care, might not have access to those specialists because the general practitioner thinks that he or she can do an adequate job. So there are in my mind some disadvantages, too. We have tried to address this problem by demonstrating to the general practitioners what skills we have. In Trondheim, we know the general practitioners, and they are training with us as fellows for half a year, so in our particular region, this may not be such a problem.
Another problem is the professional skills at the nursing homes. We don't have enough experienced nurses working at the nursing homes. Quite a few of the nurses working are not registered nurses and have just one year of education. Furthermore, up until now, work in nursing homes has had a very low status.
Our current collaboration with the nursing homes in Trondheim is helping to address this problem. We are asking staff at the nursing home for better documentation and more follow up with patients. In the nursing home, we are teaching for free. In this way, we are increasing the general skills in nursing and in medicine for the doctors and nurses at the nursing homes. Increasing the general level of skill in palliative care has an impact on the care of other non-dying patients at nursing homes. We believe that this kind of collaboration can ultimately improve patient care.
Limitations of the U.S. system
Now that you are just completing a sabbatical year in the U.S., what insights have you gleaned about how the differences in our two health care systems affect the provision of palliative care in our respective
I think the system here is problematic for palliative care, because it should be a human right to get optimal care when you are dying, independent of your economic resources. In order to get optimal palliative care in the United States, either you have to be able to pay out of your own pocket or you have to have rather good private health insurance, or be enrolled in the Medicare Hospice Benefit for care near the very end of life. That's my understanding of the system. I might be wrong.
I have also seen that the health care system here could probably benefit, at least in palliative care, from more integration. To me, the U.S. system is highly individualized and somewhat fragmented. As a doctor, a patient is your patient, and quite often I think the patient might benefit from being in a more integrated health care system, where quality and access to care depends less on access to one individual doctor who will save the day. I think patients would benefit from having a more trustworthy system of care.
For people with enough resources and the right health insurance, the United States probably offers the best specialized treatment in the world. No one can compete with that. But for those with a chronic disease, and dying is usually a chronic situation, I don't think the system is working optimally. Many successful interventions can be low-tech; you don't need to do every sophisticated intervention. Patients do need access to doctors and nurses who actually want to provide quality palliative care, and you have to have a system which actually honors them for providing this type of care. Society needs the security that each individual will have access to this type of care through some kind of insurance, probably government insurance that adequately covers the costs of providing it. I know that this is a very difficult issue in the United States. But as an outsider who lives in a country where we have such a system, its absence in this rich and privileged country is startling.
1. Jordhøy MS, Fayers P, Saltnes T, Ahlner-Elmqvist M, Jannert M, Kaasa S. A palliative-care intervention and death at home: a cluster randomised trial. Lancet. 2000;356:888-893.[Return to International Perspectives]
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