Palliative care: how to improve quality of life in terminal illness
We have all been born, and we will all die. But how do we want to die, and how can the final period be as good as possible? Researchers in palliative care aim to improve the quality of life for people with incurable diseases. Another important task is to achieve more equitable access to this care.
Text: Annika Lund, first published in Medicinsk Vetenskap nr 1 2025
Just over 90,000 people die each year in Sweden. Cardiovascular disease and cancer account for about half of the deaths. About eight out of ten deaths are expected, meaning they occur after a period of known, serious illness. This means that over 70,000 people per year need some form of palliative care, and of them, 22,000 need support from specialised palliative care expertise. Between 500 and 600 of these people are children.
In other words, about one in four people who die need care from palliative care professionals, who can handle complex symptoms and needs. In other cases, general palliative care is considered sufficient to provide comfort and relief before and during death, both for the person who is passing away and for their relatives (see box on page 37).
But how do we Swedes actually die? Are we and our loved ones surrounded by the palliative care resources we are considered to need when it becomes clear that time is limited?
Many are, but unfortunately far from everyone. There are significant differences in the resources available to different patients. This is evident, among other things, from the Swedish Palliative Care Register, where about six out of ten Swedish deaths are registered. The figures show that where you live matters a lot - in the different counties, between 4 and 24 percent of those who die receive specialised palliative care. The national average is 12 percent, compared to the approximately 25 percent who are considered to need the care.
The diagnosis you have also matters. Most of those who receive specialised palliative care have cancer. But severe COPD, heart failure, liver and kidney failure, dementia and various neurological diseases, such as ALS, stroke, Parkinson's, and MS, can lead to more complex palliative care needs. The same applies if someone is older, frail, and has multiple illnesses. Studies based on data from the Swedish Palliative Care Register show that some patients in these groups do not have access to specialised palliative care to the same extent as cancer patients, even though their needs may be similar.
Palliative paediatric care is not at all diagnosis-driven but includes many diseases and conditions, such as various chromosomal abnormalities or muscle diseases. However, the most common cause of death for children up to the age of fourteen is cancer. The geographical differences also exist within palliative paediatric care. For children, there is only one hospice, Lilla Erstagården, located in Stockholm. In the rest of the country, there are local collaborations with palliative homes or inpatient care for adults, or with other paediatric care. Children in rural areas do not receive palliative care to the same extent as children in cities.
Unequal access to palliative care
Overall, Swedish palliative care is described as uneven, with deficiencies in many areas. It is this bad: in parts of the country, specialised palliative care is only available during office hours, which is not at all align with the needs of seriously ill patients. Recurrent conclusions in reviews, care programmes and investigations are that palliative care needs to be prioritised higher so that organisational structures take shape - patients and relatives should be able to receive relief for complex symptoms even on a Friday evening. This was highlighted as recently as November 2024, when a proposal for an updated national cancer strategy was submitted to the government.
But when this care does reach people, it is usually appreciated. In the ‘relative survey’, reported in the Swedish Palliative Care Register, just under nine out of ten people state that they are completely satisfied with the specialised palliative care their relatives received. In general, palliative care, the corresponding figure is lower, at around 75 percent.
However, the news to receive palliative care is often unwelcome, says Linda Björkhem-Bergman, Professor of Palliative Medicine at the Department of Neurobiology, Care Sciences and Society at Karolinska Institutet.
- ‘Many of our patients become scared and sad when they hear that they are going to receive palliative care. But when they come to us and see the care we provide, almost all are very satisfied and grateful. Many say they would have liked to have had access to this care earlier,’ says Linda Björkhem-Bergman.
So - what exactly is palliative care? What is the care that more people are considered to be in need of but that spontaneously evokes negative feelings?
- Palliative care is characterised by a holistic view of the person. Specifically, it means that care aims for the patient to live with dignity and as high a quality of life as possible until the end of life. Support for relatives is also included,’ says Linda Björkhem-Bergman.
She talks about two major misconceptions that the profession particularly wants to work on eliminating. One is that palliative care is synonymous with end-of-life care. The other is that the care involves ending treatments and then passively waiting for the end.
- The public needs to know what we can do and what opportunities we have. We can work in parallel with specialists in areas such as oncology and cardiology, who can extend life. At the same time, we can actively contribute to quality of life. This is our area,’ says Linda Björkhem-Bergman.
Palliative phase may be long
When an illness such as cancer can no longer be cured, care transitions to become palliative. This early palliative phase can last for many years. At this stage, palliative care needs may be suspected or simply put: there may be a need for more support and relief than what can be offered within, for example, oncology or cardiology. But it does not have to be the case.
In what is called the late palliative phase, the aim is no longer to prolong life. In cancer, this phase often begins when life-prolonging treatments no longer work. In other diseases, it can be harder to pinpoint such a clear breakpoint.
There are clues that signal more clear needs for palliative support. These can be found, among other things, in the document describing a palliative care pathway, developed by Sweden's counties in collaboration. The purpose of the document is to achieve nationally equitable care. Signs indicating palliative care needs include, for example, someone needing to rest more than half of their waking time, significant weight loss, or frequent infections. There is more to be vigilant about, which is also listed in the document.
- These are concrete signals that it is appropriate to enter a palliative care pathway. It is good information for patients and relatives, as well as other physicians/doctors in charge of their treatment in, for example, oncology or cardiology,’ says Linda Björkhem-Bergman.
A very common symptom in patients in the palliative phase is extreme tiredness, also known as fatigue. This lack of energy is troublesome because it affects quality of life while being difficult to treat.
Linda Björkhem-Bergman and her colleagues have investigated the role of vitamin D in this context. A study included nearly 250 patients with advanced cancer in the palliative stage and confirmed vitamin D deficiency. They were randomly assigned to receive either vitamin D supplements or a placebo for twelve weeks. Those who had their vitamin D deficiency compensated were less tired. They also increased their pain-relieving opioids at a slower pace. In a new study, researchers will now investigate the best doses for vitamin D to have an effect specifically on fatigue.
The method of conducting studies, randomly assigning patients to treatment or placebo, is considered to provide the most reliable study results. However, it can be difficult to carry out in patients in the palliative stage, for both ethical and practical reasons.
The patients who participated in the vitamin D study were later interviewed about their experiences as part of another study. It showed that the patients felt proud to be able to participate in research and that they accepted the placebo setup.
‘This opens the door to conducting more such randomised, placebo-controlled studies, even for patients in palliative care. And it is needed, says Linda Björkhem-Bergman, who has a background as a clinical pharmacologist.
- ‘Many guidelines and recommendations used in palliative care are based on studies conducted on completely different patients, who are much healthier and have different conditions,’ she says.
Her research group is planning a study where some patients will reduce their blood pressure and cholesterol-lowering treatments while the rest will continue as usual.
- There is a fear of removing these medications. But it is common for blood pressure to drop on its own at the end of life, and cholesterol levels can also decrease. Then the medications mostly cause side effects without providing benefits,’ says Linda Björkhem-Bergman.
Early palliative care brings benefits
A recurring criticism in documents describing or reviewing Swedish palliative care is that patients who receive this care often receive it too late. There is evidence that so-called early integration provides benefits - on many levels. A high-profile study from 2010 showed that early integration into palliative care even extended life. It included patients with lung cancer, which was already incurably spread in the body when detected. All participants in the study received life-prolonging oncological treatment, but half also received palliative care from the start. The rest received it later in the disease’s course.
Those who received palliative care from the beginning reported a better quality of life, which was expected. And, they also lived an average of three months longer, which was not expected. The study does not provide an explanation for this. But Peter Strang, Professor Emeritus at the Department of Oncology-Pathology at Karolinska Institutet, has a theory.
- ‘If you are to endure life-prolonging oncological treatment, you need support between courses. Chemotherapy knocks out white blood cells so that you do not react as usual to an infection. Access to palliative care makes it possible to treat an infection while it is still mild. If, on the other hand, you have to rely on oncology, which is only available during office hours, or the emergency department, the infection can grow. This can lead to the next oncological treatment session being postponed or cancelled. Without palliative care support, there is a risk that the care of the cancer itself will worsen’ says Peter Strang.
A recently concluded study in a Swedish setting with the same setup, where some patients with incurable cancer received early integration into palliative care and others only later, showed that no extended survival. But those who received early access to palliative care reported better quality of life, made fewer visits to emergency departments and had fewer days of hospitalisation.
- There are really only advantages to having early access to the support available in palliative care. Unfortunately, many people think that it is a choice – that you either continue cancer treatment or receive palliative care. However, it is not like that; you can have both. ‘This thinking needs to take hold in the public so that palliative care is not perceived as a threat,’ says Peter Strang.
He is an oncologist by training but has worked in palliative care since the 1980s. He emphasises that there is knowledge to provide good relief for all symptoms that an incurably ill or dying person may struggle with. And the term ‘symptoms’ is broad in palliative care with its holistic view of the patient. Physical, psychological, social and existential pains are in focus, throughout the disease process. It can involve managing painful bone metastasis, dealing with grief over lost abilities, liaising with the Social Insurance Agency, or trying to evoke feelings of hope and purpose. Or relieving pain from a wound, helping to articulate what is most important in life, contacting the children's school or dealing with death anxiety.
Death anxiety not the same as fear of death
Peter Strang is particularly interested in existential pain.
- ‘I have worked a lot with death anxiety and death worry. It is important to distinguish between these concepts. Anxiety lacks focus and is a fear where you do not really know what you are afraid of. Worry is fear of concrete things,’ he says.
He explains that death worry is often linked to practical aspects, such as how death itself will be. And there are reassuring messages to give – it is possible go relieve, for instance, pain, shortness of breath, nausea, anxiety and worry. Most people die calmly and peacefully, where a change in breathing patterns slowly but surely raises the level of carbon dioxide in the blood, which has a sedative effect.
- ‘Talking through this tends to reduce death worry. Or you can transform more diffuse death anxiety into a more manageable death worry,’ says Peter Strang.
Eventually, the phase known as end-of-life care comes. Signs that very little time of life remains, perhaps a week or only days or hours, include difficulty swallowing. First, it is possible to drink only small amounts and then not at all. It is common to sleep most of the day, and many become continuously less conscious. Very close to the end, hands and feet usually become cold, and the skin can become slightly bluish (mottled), while breathing often becomes more shallow and irregular.
In this situation, many relatives want the care to provide IV fluids. ‘It is a difficult ethical question,’ says Christel Hedman, a researcher at the Department of Molecular Medicine and Surgery at Karolinska Institutet.
- ‘It is deeply ingrained in us that we must get fluids, and most relatives think that IV fluids at the end of life are completely obvious. But for the staff, this is troublesome because clinical experience suggests that it does not benefit the patient,’ she says.
Nowadays, studies show the same thing. Via the Swedish Palliative Care Register, Christel Hedman and her colleagues looked at how many patients received IV fluids during their last day between 2011 and 2022. This was then matched against the symptoms the patients had. The studies show that IV fluids increase the risk of shortness of breath in a dying person. At the same time, it provides no real benefits - thirst can be alleviated by oral care, gently moistening or lubricating the lips and mucous membranes with special soft foam swabs.
- If we can follow a patient and relatives over time, we can discuss this before it happens. It makes the situation less charged. In other situations, where relatives demand IV fluids, we sometimes give it anyway, being careful to remove it immediately if it causes discomfort for the patient. We do not want to create a feeling of conflict with the care among the relatives. We know it negatively affects the grieving process,’ says Christel Hedman.
Hospital most common place of death
According to the Swedish Palliative Care Register, nearly four out of ten Swedes die in hospital, making it the most common place of death. Almost as many die in nursing homes, and just over one in five people die at home. The same register reports various quality parameters. This includes having a documented care plan with wishes for the final period or assessing pain and other symptoms during the last week of life.
The figures are consistently worse for those who die in hospital. For example, nearly one in four people there die completely alone, without either relatives or staff by their side.
For nursing homes, the statistics are somewhat better than for hospitals, but still worse than for specialised palliative care. This is despite the fact that deaths are usually expected in nursing homes. Dementia also usually leads to more complex palliative care needs.
Christel Hedman, who is also a researcher at Lund University, has started a study where several nursing homes in Skåne and Stockholm will use what is known as the National Care Plan for Palliative Care (NVP). Simply put, it is a template with questions that help staff identify the palliative care needs of an individual resident, how to address them, and when to consult specialised palliative care. NVP is well established in palliative care, but it is used less in nursing homes and dementia care.
- The idea is that using this care plan will lead to staff initiating conversations with residents and their relatives. Then there will be documented wishes, preparations and plans for the final period. This type of preparedness is often lacking in general palliative care. Hopefully, it can lead to better symptom relief and improved quality of life, but also fewer emergency admissions and other measures that do not benefit the patient,’ says Christel Hedman.
Facts: Palliative care can be provided in many ways
- General palliative care can be provided in nursing homes, in a regular hospital ward, or in the patient's home in collaboration with a health centre or an emergency hospital. Collaboration between different actors, such as health centres, home care services or nursing homes, is a prerequisite for providing good palliative care in these cases. A team may consist of a primary care physician, a district nurse and municipal care staff. When other expertise is needed, such as a dietician or physiotherapist, the team can make such contacts.
- Specialised palliative care is intended for patients with complex symptoms or that have greater needs for other reasons. This care is provided by a medical team that includes many professionals, usually doctors, nurses, physiotherapists, occupational therapists, dieticians and counsellors or social workers. A priest or other spiritual representatives may also be included. The care can be provided as inpatient care or at home by mobile teams and also requires well functioning cooperation with external specialists in, for example, oncology, cardiology or paediatrics.
- Palliative care is organised in different ways across the country. There is no national consensus on the roles of general versus specialised palliative care. In some counties, only those with cancer receive specialised care. There is also no consensus on the expertise that should be included in the teams.
Sources: Regional Cancer Centres in Collaboration, National Board of Health and Welfare's Term Bank, Annual report of the Swedish Palliative Care Register 2023, among others.