To Örebro University

Background: Cancer and circulatory diseases are overrepresented among the annual deaths in Sweden. Specialized palliative care (SPC) is considered complex, especially by cancer patients who have undergone long-term treatment. Relatives caring for a person with cancer within the home are faced with many demanding tasks.

Purpose: To describe and map relatives' experiences of the end-of-life care given in specialized palliative home care from a Swedish national perspective.

Methods: A register study was conducted with a mixed-method design using qualitative and quantitative descriptive data from relatives (n = 563). Reflexive thematic analysis was used for the qualitative data, followed by a quantifying process inspired by Sandelowski.

Findings: Two main themes were identified, with related themes and subthemes: "Home-a safe, dignified, and good place for dying" and "Home-a challenging, lonely, and unworthy place for dying." As a place of dying during SPC, home provided both security and challenging events. It offered security for the family and upheld their dignity with the presence and support of competent healthcare professionals (HCPs). Conversely, challenging events emphasized how the relatives were unprepared for their loved one's death and struggled to cope with the end-of-life situation. Some relatives felt that too much of the responsibility was left to them. However, the quantitative data showed that 99.1% of the relatives knew where to find urgent help during the last week of life, and the quantified qualitative data showed that HCPs were often available and supportive.

Conclusion: Specialized palliative home care must strive to minimize challenging events that relatives experience during their loved one's end of life and reinforce protective factors such as the presence of HCPs. As the end-of-life period is challenging for families, adequate support and competencies must be secured. Otherwise, there is a risk of increased family suffering and relatives having difficulties with grief after the death.

Background: Many patients who receive palliative home care wish to die at home, even when the symptom of the disease deteriorates. Despite this, large number of patients die in hospital. 

Aim: To map the occurrence of patients receiving specialized palliative home care being transported to hospital near death in Sweden. 

Methods: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients ≥18 years of age enrolled in specialized palliative home care with dates of death 2015 11 01 – 2022-10-31 were included (n= 39,698). Descriptive statistics were used to compare patients who were transported to hospital and died there within seven days of arrival, and patients who were not transported or transported earlier than seven days before death.

Results: Of the total study population, 7,383 patients were identified as dying in hospital/other care unit within 7 days of transport from specialized palliative home care. The majority (74%) were admitted to a specialized palliative care unit, 23% to a non-specialized palliative care unit and 3% to additional care units. Most patients died 1-2 days after arriving at the hospital. No clinical relevance differences were noted regarding sex, age, or diagnosis when comparing transported patients with non-transported patients, whereas the transported patients had more frequent dyspnea (31% vs. 23%, p <0.001) and anxiety (60% vs. 57%, p<0.001). Presence of several simultaneous symptoms was significantly more common in the transported group (27% vs. 25%).

Conclusion: Many patients enrolled in specialized palliative home care were transported and died in hospital. Most died 1-2 days after arrival. They had complex symptoms and not all patients were admitted to a specialist palliative care unit. Some common denominators, such as symptoms and symptom burden, can be noted in the patients who are transported, but more studies are needed to identify the causal relationship of these transports.

Patients near death being transported to emergency care despite receiving specialized palliative home care - A registry study

Background: A significant proportion of patients who receive palliative home care express a preference for dying at home, even when the symptoms of their disease deteriorate. Despite this, a large number of patients die in hospital, suggesting that patients are transported from home to emergency care. These transports can mean that dying patients end up in the emergency department, a place that is less suited to end-of-life care. The emergency department environment poses great challenges for emergency nurses trying to care for patients near death. Lack of space, time and staff are cited as the main barriers.   

The aim of this study was to map data on patients near death who had received specialized palliative home care and were transported to hospitals in Sweden.

Method: A national retrospective cross-sectional study was conducted using data from the Swedish Register of Palliative Care. The study included patients aged 18 years or above who were enrolled in specialized palliative home care and who died between 1 November 2015 and 31 October 2022 (n=39,698). Descriptive statistics were utilized to contrast patients who were transported to hospital and subsequently died within seven days of arrival, with patients who were not transported or transported earlier than seven days before death.

Results: A total of 7,383 patients were identified as having died within seven days of being transported from specialized palliative home care to a hospital or other care unit. The majority (74%) were admitted to a specialized palliative inpatient care unit, 23% to a non-specialized palliative inpatient care unit, and 3% to additional care units. The majority of these patients died within one to two days of arrival at the hospital. No clinical relevance was observed in the comparison of transported patients with non-transported patients with regard to sex, age, or diagnosis. However, transported patients exhibited a higher prevalence of dyspnoea (31% vs. 23%, p <0.001) and anxiety (60% vs. 57%, p <0.001). The simultaneous occurrence of multiple symptoms (e.g., confusion/anxiety, pain/severe pain, dyspnoea/respiratory secretion) was significantly more prevalent in the transported group (27% vs. 25%).

Discussion & Conclusions: A significant proportion of patients enrolled in specialized palliative home care were transported to hospital and subsequently died there. The majority of patients died within one or two days of admission. Complex symptoms were present, and not all patients were admitted to a specialized palliative inpatient care unit. Some commonalities, such as symptoms and symptom burden, can be observed in the patients who were transported. However, further studies are required to identify the causal relationship between these transports. Our study visibilises a phenomenon that can be experienced by the involved patients, relatives, and healthcare personnel as a major event in a vulnerable situation. We see a necessity to gain a deeper understanding of the underlying reasons for this type of transport and whether they are compatible with good palliative care and a dignified death.

Background: The majority of palliative care patients express a preference for remaining at home for as long as possible. Despite progression of disease there is a strong desire to die at home. Nonetheless, there are transfers between care settings, demonstrating a discrepancy between desired and actual place of death.

Aim: To map the prevalence of patients near death undergoing specialized palliative home care and being transferred to inpatient care in Sweden.

Methods: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients >= 18 years of age enrolled in specialized palliative home care with dates of death between 1 November 2015 and 31 October 2022 were included (n = 39,698). Descriptive statistics were used.

Results: Seven thousand three hundred eighty-three patients (18.6%), approximately 1,000 per year, were transferred to inpatient care and died within seven days of arrival. A considerable proportion of these patients died within two days after admission. The majority (73.6%) were admitted to specialized palliative inpatient care units, 22.9% to non-specialized palliative inpatient care units and 3.5% to additional care units. Transferred patients had more frequent dyspnoea (30.9% vs. 23.2%, p < 0.001), anxiety (60.2% vs. 56.5%, p < 0.001) and presence of several simultaneous symptoms was significantly more common (27.0% vs. 24.8%, p 0.001).

Conclusion: The results show that patients admitted to specialized palliative home care in Sweden are being transferred to inpatient care near death. A notable proportion of these patients dies within two days of admission. Common features, such as symptoms and symptom burden, can be observed in the patients transferred. The study highlights a phenomenon that may be experienced by patients, relatives and healthcare personnel as a significant event in a vulnerable situation. A deeper understanding of the underlying causes of these transfers is required to ascertain whether they are compatible with good palliative care and a dignified death.

Kartläggning av transporter till sjukhus av patienter nära livets slut som får specialiserad palliativ hemsjukvård - en nationell registerstudie

Camilla Wall 1,2, Karin Blomberg 2, Elisabeth Bergdahl 2, Helena Sjölin 2 & Fredrik Alm 2

1 Onkologiska kliniken, Universitetssjukhuset Örebro, Region Örebro Län

2 Institutionen för Hälsovetenskaper, Fakulteten för Medicin och Hälsa, Örebro universitet

Bakgrund: Tidigare forskning visar att majoriteten av patienter som erhåller palliativ vård i hemmet har en önskan om att få dö där. Viljan att få dö i hemmet kvarstår i de flesta fall även när symtomen av sjukdomen intensifieras. Samtidigt har det visat sig att det sker transporter till sjukhus av patienter nära livets slut som erhåller specialiserad palliativ hemsjukvård.

Frågeställning: Att kartlägga förekomsten av transporter till sjukhus av patienter nära livets slut som vårdas med specialiserad palliativ hemsjukvård i Sverige.

Metod: En nationell retrospektiv tvärsnittsstudie baserad på data från Svenska Palliativregistret. Patienter inskrivna i specialiserad palliativ hemsjukvård med dödsdatum 2015 10 31 – 2022-10-31 inkluderades.

Resultat: Totalt 7 383 patienter identifierades dö på sjukhus/annan vårdenhet inom 7 dagar från transport från specialiserad palliativ hemsjukvård. Vanligast var att de transporterade avled på sjukhuset dygn 1-2 efter ankomst. Av dessa patienter blev majoriteten (74%) inlagda på en specialiserad palliativ vårdavdelning, medan 23% blev inskrivna på icke-specialiserade palliativa vårdavdelningar och 3% till övriga vårdenheter. Vid jämförelse med patienter som inte transporterades eller transporterades tidigare än 7 dagar från dödstillfället (n= 32 315), noterades inga signifikanta skillnader av klinisk relevans beträffande kön, ålder eller diagnos. Båda grupperna hade en komplex symtombild, men signifikant fler patienter i den transporterade gruppen uppvisade symtom som andnöd (31% vs. 23%, p <0.001) och ångest (60% vs. 57%, p <0.001). Förekomst av flera samtidiga symtom (förvirring/ångest, smärta/svår smärta, andnöd/rosslighet) var vanligare i den transporterade gruppen (27% vs. 25%).   

Konklusion: Stort antal patienter inskrivna i specialiserad palliativ hemsjukvård transporteras och dör på sjukhus. Patientgruppen har komplex symtombild och alla patienter blir inte inskrivna på en specialiserad palliativ vårdavdelning när de anländer till sjukhus. Vissa karaktäristiska kan noteras hos dem som transporteras, men fler studier är nödvändiga för att kunna identifiera orsakssambandet till att dessa transporter sker.