A caring safety net or a broken shelter—Relatives’ experiences of specialized palliative home care: A national registry study

Gratitude for being present and supporting the dying person in the face of death

The relatives described their loved ones living at home during the last days of life, with them participating in the care or being present at the time of death. Sometimes, the relative was alone with the dying person, but often the whole family or parts of the family were gathered. Many said that HCPs were also present. One relative who had accompanied their loved one in the ambulance said that the death had taken place there, during the journey. Several relatives stated that they were close by but asleep at the moment of death.

The relatives were thankful for being able to be present at their loved one’s death, and several expressed that this felt good. Some of them described that this was made possible by the HCP’s information and support. They said that information about the signs of an approaching death was helpful to them in assessing when the death was likely to happen.

The relatives appreciated having their loved one at home, as it allowed them to be there the whole time, making it possible for the death to happen in the home. One relative highlighted the importance of being able to express and scream out emotions before the HCPs came to the house, while another said that she would never forget the moment of death.

Positive insights and feeling safe to the proximity of death

Relatives experienced positive insights in the presence of death, thanks to HCPs and other family members, which made it possible for the loved one to be cared for at home. Being guided by HCPs was often expressed as bringing relief. The relatives appreciated knowing how much time was left and being able to have a relationship and conversations with their loved one until close to death.

Other positive insights concerned a symptom-free loved one and the maintenance of dignity, as the relatives were able to take care of their loved one after the death had occurred.

The relatives described feelings of security and fearlessness as their loved one approached death. These experiences were often related to having a healthcare team to call for help, which provided safety for both relatives and their loved ones. The relatives’ experiences of safety were underpinned by the presence of HCPs; being able to contact them when needed for support; and being able to talk to a doctor when desired.

Several relatives highlighted that when the SPC team became involved, this provided security. Being able to trust in healthcare was important, and being able to experience a calm, undramatic death where relatives felt prepared for death to occur.

A calm, peaceful death with wishes fulfilled

Many relatives said that their loved one had experienced a calm and peaceful death. They described examples of when their loved one just fell asleep, experiences of peacefulness, and good farewells. One relative said they had been talking to the dying person in the last few moments before death. The relatives described experiences of the passing as quiet and dignified. One said that her loved one wanted to be alone during the last days, but not on the last evening; then, he wanted her to be there all night long while being totally calm. Another person described a beautiful end, even though the relatives did not understand that their loved one would die very soon.

The relatives also described the fulfillment of wishes at the end of their loved one’s lives. These wishes sometimes came from the dying person, sometimes from the relative, and sometimes from both. The wishes included receiving more help when needed, the loved one being cared for at home until the end, with relatives or personal assistants present and involved in the care. But also, being able to be together as a family or with the partner at the EoL. Conversely, one relative described a loved one who had wished to be alone in the last hours before death.

Good healthcare organization

Many relatives felt that the healthcare organization was good, as their loved one’s healthcare team did their best to provide the optimal care. For example, they described doctors taking their time to make assessments and talk to their loved ones, a feeling of being involved in decisions, and getting the help they felt was needed. The HCPs had time for both the dying person and their relatives and provided the right information. The relatives appreciated being able to call for help at any time; they also appreciated it when the HCPs did that “little extra.” When the contact with SPC worked, the relatives were satisfied.

Available, supportive, and empathic HCPs

The relatives often described the HCPs as available and supportive. HCPs (a doctor, a nurse, or assistant nurse) were present in the home at the moment of death or arrived quickly after a call. Several relatives highlighted the security of having a staff member there whom they already knew from previous contact. Availability also included HCPs being there to answer questions. Frequent contacts were appreciated, together with conversational support. Many of the relatives felt gratitude for the support they received, as support made it easier to cope with the situation. Supportive qualities of HCPs were highlighted as being empathetic, understanding, and human. Thus, an empathetic response from HCPs was important to the relatives. This included nurses asking about their well-being, being able to meet the team counselor, and having a conversation with a HCP after the death had occurred. Other aspects highlighted were responsiveness, assistance in case of need, consideration and understanding, and a feeling of grace in the care of their loved one. The relatives described the importance of HCPs explaining what care actions were planned for their loved one. Thoughtfulness, a helpful appearance, and a respectful manner provided security for relatives in the difficult time of death.

Building relationships with competent HCPs

The relatives noted that the HCPs built relationships with them; for example, via personal meetings and keeping in touch by telephone. They said that the HCPs sat down with them and let them know they could reach out at any time. Some of the relatives described HCPs taking the time to explain what to expect and their options in the situation.

The relatives described respect, compassion, and professionalism as aspects underpinning good relationships with HCPs. They found value in the presence at the death of a previously known HCP.

Many relatives highlighted good care and the expertise of the HCPs within the team. Some of them said that the HCPs were fantastic and that they were impressed by their competence. Relatives appreciated it when they received explanations and medical assistance if necessary.

The relatives highlighted HCPs who took the initiative, were engaged, gave information about the phases and what was to come, and were friendly and nurturing. Many of the relatives had confidence in the team, and a professional approach provided security for the relatives. Some of them experienced the HCPs as safe and said that they guided them, answered their questions, and were knowledgeable about what could relieve symptoms.

Negative insights into the proximity of death

The relatives experienced a range of negative insights when involved in a loved one’s death. They described difficulties in understanding that their loved one would die, and in knowing what to do for the dying person. Sometimes HCPs took the knowledge of relatives for granted, even though relatives themselves felt that they did not have the right knowledge. Occasionally, it was HCPs who did not understand that the person was dying. Relatives experienced strong emotions, a lot of anxiety, and felt unprepared for the tough times. Some were also not met with honesty in the situation, while others thought that remarks about the approaching death created confusion in the dying person.

Relatives noted that it was difficult to get information about a diagnosis and that there was often a delay before the loved one received full care. Requests that were not heeded created disappointment and anger. Furthermore, relatives described how difficult it was to witness the dying and that there were loved ones who did not yet feel ready for their lives to end. Experiences also concerned situations after the onset of death, as HCPs who failed to close the eyelids of the dead person.

Being unprepared for death and for the difficulties of saying goodbye

Several relatives had not accepted that their loved ones were going to die, and some found it difficult to accept help. Many felt unprepared, often because of the rapid dying process. A lack of acceptance by the dying person made communication in the family difficult, and for the relatives to gain understanding that death was approaching. The situation often became more apparent when palliative advanced healthcare at home (ASIH) was engaged. Some relatives had hope and faith that they would have more time together, while some had simply not observed the signs that death was near. Some relatives noted that there was sometimes a lack of preparatory information about what was going on, while others had received information but were unable to absorb it. However, HCPs mostly tried to help the relatives understand that death was near. Sometimes, the relatives were unsure if the dying person knew what was going on because of dementia.

Some relatives also described how hard it was to say goodbye to their loved one. One relative expressed the difficulty of thinking about the dying person’s situation due to their own anxiety. Another relative described how the death sequence made them so taken by the moment that they were unable to speak. However, difficulties saying goodbye were also due to more practical reasons; for example, during the COVID-19 pandemic, restrictions in care homes meant that the only contact allowed was through phone calls.

Acute grief and struggling to cope

A few relatives expressed strong emotions related to their grief; for example, by crying over the loss of a partner, or not being open to receiving help because of their own great anxiety. It could come as a shock when the relative really understood how close to death their loved one was. One relative explained that they could not remember their own state during the past week, but that as they tried to remember, they found themself crying, as they had a feeling of having wanted to be strong and accomplished.

The relatives testified to tough times, when anxiety and uncertainty were burdensome. Some described how the difficulty of understanding the situation—for example, not knowing what PC meant, created confusion. Relatives described how they had lacked guidance. They expressed that it was emotionally difficult to be helpful and try to understand the signs in the EoL process. One thing that made coping more difficult was when their loved ones did not want to talk about dying or lacked insight. There was also anxiety afterwards about not having had insight into the proximity of death, which led to not being present at the moment of death. Others testified that it had been difficult to witness an unpleasant death.

Difficult various death situations

Relatives described experiences of different severe deaths in relation to an unattended or unexpected death, a long and draining death process, or a sudden death and/or a short death course.

Several relatives described situations where their loved ones had died while the relatives were not in the room, were asleep, or had just left their visit. Sometimes, relatives could not get there on time. Some of the relatives said that they had not received the desired information that the death was coming, but others also believed that even having all the information would not help people understand what to expect. There were also descriptions of loved ones having been found dead by HCPs; sometimes the nursing staff were on site even if no relatives were present. One relative said that their loved one had died unexpectedly in an ambulance.

Some relatives had found that the process of death was draining not only for their loved ones but also for themselves. There were stories of unpleasant deaths. Relatives described endings that did not go well, where sedation or pain relief did not work. Sometimes, toward the end, the dying person exhibited difficult or altered breathing. The relatives highlighted the anxiety of their loved ones, and perceived feelings such as suffocation or drowning. The relatives said that HCPs could get tired, and that the uncertainty and responsibilities could be burdensome. For some relatives, the final period meant a feeling of being alone in the situation, missing the presence of HCPs.

Some of the relatives said their loved one’s death had been sudden, or that the death course had been short. This included symptoms suddenly emerging and changing the situation for the dying person. Sometimes, the rapid process meant that there was no time to make any contacts with HCPs or time to understand what was happening. Several relatives said that they were informed about the phases toward the end. However, some of them expressed disappointment over fighting for a long time for help that was then not needed because their loved one died so quickly.

Lack of support and treatment with responsibility left to relatives

Some relatives had difficulty with accepting support, sometimes because of their own poor wellbeing, but in other cases they were not provided with support. They lacked EoL monitoring in the home, conversations with doctors, and close contact with healthcare. Some of them felt they were treated badly, for example when it came to understanding and conversations. The relatives described loved ones and themselves not being listened to, and requests not being complied with. Several relatives expressed that support became better after the initiation of SPC, as they felt that home care did not work so well or their support was non-existent.

Some relatives also shared stories about when the responsibility in the EoL situation was left to them. For example, when it had been up to them to contact the team, or aid officers who had not understood that the need for care changes rapidly at the EoL.

Relatives’ descriptions also emphasized a lack of cover and not being told how to best support their loved one. Some of them were employed in care work and were therefore knowledgeable about the field and said that they had been given too much medical responsibility, for example, in assessing when pain relief was needed. Cognitive problems or dementia in the dying person made it more difficult for the relatives if their loved one declined care at home.

Lack of organization, resources, and continuity

Some descriptions concerned shortcomings within the SPHC. For example, there was a desire for close contact initially, and it could take a long time before help was initiated if someone had to talk to the doctor. The relatives also expressed that there was a lack of time in relation to performing medical procedures in the patients who needed more caring interventions. The relatives had wanted more support in the final stages and after the death, for example by a counselor. Some of them said they were given the wrong phone number for the healthcare team, or leaflets about PC that created confusion.

The relatives described how a lack of cover meant they had to watch their loved ones themselves, leaving many of them exhausted. Proximity to resources was also lacking; for example, the lack of fentanyl patches in the medicine box meant that relatives had to travel to a distant pharmacy. A lack of oxygen or suction equipment in the home was also highlighted.

The relatives sometimes described substandard care; for example, when there was no time to care about the need for medication. It was desirable to have longer conversations when the loved one was diagnosed, as such conversations were perceived as difficult. Furthermore, relatives expressed that healthcare teams did not always talk to each other, and making different decisions was confusing for the relatives.

Lack of conversations and information from healthcare

The relatives did not always feel involved in the care and needed information about what awaited them at the EoL. They described a lack of conversations with HCPs; as talking to a doctor to get information about the time perspective, or talking to a nurse to ask why more pain relief was being given, or why no counselor contact took place despite this having been promised. One relative wished HCPs would have talked more about feelings with the dying person. Information about the close relative allowance had also, in some cases, come too late.

Not all relatives knew what PC meant. Some described not getting information about whether their loved one was in a palliative phase or about the illness itself. Some relatives had been forced to interpret the seriousness of the situation for themselves. Several relatives stated that the information was improved as the SPC team became involved.

Lack of organization between healthcare contexts and legal frameworks

The relatives expressed that it was difficult to know who was in charge of what (primary health center, home care service, district nurse, SPC) and to grasp how everything was organized. They described negative experiences related to the cooperation between different care contexts, such as between municipal home care and SPHC or between hospital healthcare and home healthcare. Sometimes, relatives lacked primary care as an intermediary between contexts.

Many relatives described shortcomings in relation to when their loved ones were sent home from the hospital and how the family “fell through the cracks.” They were referred to the emergency department and the healthcare center while waiting for ASIH, which sometimes could take several weeks to get. Care providers also disagreed about who was responsible for writing the referral to ASIH. The relatives noted that the municipality’s aid officers could have poor knowledge of PC needs, and there was sometimes a lack of understanding that home care was needed. Occasionally, the home care service did not know what care needs the person had when they came home.

Difficulty assessing symptoms and lack of symptom relief

The relatives stated that providing pain relief was a heavy responsibility to bear, and that the situation was made more difficult when there was no medicine pump, oxygen, or suction at home. They had found that the nurses’ assessments of their loved ones’ symptoms sometimes differed from the relatives’ own assessments. Symptoms that were described by relatives as being hard to alleviate were related to depression and anxiety, respiration, confusion, and pain breakthroughs, for example, if pain relief should have been given but was not. Relatives described how their loved ones experienced pain during nursing and transfers. Sometimes, the dying person could not tolerate the morphine patch. One relative described not understanding why the nurse gave their loved one more morphine, as the loved one was already highly sedated and the extra morphine would accelerate the death process.