Eighty percent of Canadians choose home as their preferred place of death. (1) However, only about 30% have their wish granted. (2) Regardless of where they die, people facing progressive life-limiting illnesses spend many of their declining months at home. The typical phenotype of a person being cared for at home has one or more advanced non-curable conditions, wants to avoid the ER or hospitalizations, and is being cared for by their informal care team, ‘their family.’ Over the years, the level of clinical complexity has increased, caregivers are more aged, and community supports have waned, all of which have contributed to the need for increased rapid response supports in the home environment. Evidence shows that paramedics providing palliative care in the home improve patient satisfaction and decrease ambulance transfer to the emergency room. (3)
For paramedics to provide a palliative care approach in the home, they have necessarily required formal palliative care training. In addition to acquiring the skills to provide ‘comfort measures,’ paramedics will need to understand and appreciate the patient’s natural care team—the ‘family’. No doubt, there are many new concepts to this approach to care that require a re-wiring of usual paramedic practice patterns. The following constructs are essential to consider as paramedics are integrated into the fibres of a home-based palliative approach to care.
1. Families are the ‘first responders. Contrary to popular belief, the paramedics are not always ‘first responders.’ They are often ‘second responders’. Most people with progressive life-limiting illnesses do not live alone. The first responder on the scene is typically the person’s ‘family’ member or informal caregiver. Unfortunately, this informal layer of support is often unprepared and ill-equipped to respond to a perceived crisis.
2. Families lack an illness ‘roadmap’. They are seldom offered information about the ‘big picture’ of the illness, describing what to expect and how things will unfold. This is often, despite having had many teams involved in the patients’ care. Health care professionals are busy dealing with acute issues, treatment decisions, and test results. Rarely do they have time to explain to the patient and family what any of it means in the context of their illness trajectory. Often the ‘long-view’ of the illness is avoided because of the worry that the health care provider will make the patient and family give up hope. Without any discussion about the overarching illness roadmap, families operate in their caregiver/first responder role in the dark, with no formal interview, training, coaching or respite from the role.
3. Family caregivers often feel unprepared, self-doubting and anxious in their role. Without knowing what is happening and what to expect, all typical and expected changes in their loved one’s condition are perceived as ‘wrong’ and interpreted as a crisis. It would be like a pregnant person not knowing three trimesters exist and what labour and delivery will be like. Similarly, families do not have a ‘play-book,’ and their threshold for panic is lower without it. Fear and anxiety blur their clinical judgement, and the result is that families commonly misinterpret the meaning of what they are seeing. Too often, they feel that their loved one is suffering.
4. Family caregivers are part of the paramedicine ‘unit of care’. They often suffer as much, and sometimes more, than their loved ones. Their suffering influences their read on a situation and can fuel their sense of crisis. Families anticipate that their loved one will have pain and that it will crescendo until death. They are hyper-vigilant and constantly scanning for pain even when pain has never been part of the patients’ illness experience. Many of them promise their loved ones that they will protect them from pain. So doctors prepare caregivers to respond to pain by stocking pain medications in the home. They, too, worry about pain. Because ill-informed family members anticipate pain, pain medication is initiated and titrated frequently, and suddenly their loved one becomes restless and agitated from the side effects of opioids. Once again, the patient is perceived to be in pain. This perception triggers more pain medications to be given, and the vicious cycle ensues.
5. Families feel better when they ‘take action’. They feel less helpless when they perform a duty, which usually means giving their loved ones more medication, than when idly standing by and observing their loved ones’ pain. Paramedics can fall prey to the same pitfall in their mandate to ‘respond to a crisis’. The best assistance can come in the form of just ‘being’ instead of ‘doing’. Often what is needed is a calming presence.
6. Most important, every 911 call is an opportunity for the paramedic to educate the patient and family/caregiver. What precipitated the call? Is it likely to reoccur based on the natural history of this particular illness? How can it be prevented or identified earlier next time? How can the first responder’s action plan be fine-tuned for the future?
Paramedics arriving on the scene of a person requiring a palliative approach to care would benefit from taking their time to assess the situation comprehensively. Know that this family and informal caregiver is doing their best with very little preparation for their role. Rarely has someone sit down with them to explain their role, the regular changes they will experience in their loved one’s condition, and how to differentiate what is expected versus what is not. Many calls to 911 are triggered by family panic, but often what is needed is a trained professional to arrive for reassurance.
It is helpful to ask the family if their concern is due to a sudden or gradual change in their loved one’s condition. Has this ‘emergency’ ever happened before? If so, what was done? Sometimes the situation will require intervention, like medication. However, often what is required is the strength to resist changes to the treatment plan and instead listen. Hear from the family how worried they are, how scary it has been, how isolated they feel making medical decisions. Most families are operating with half the information they must have to perform in this role that has been bestowed upon them.
The home is, after all, a unique setting requiring consideration of the family as not only our care partners; but, in many cases, the care recipient as well. They, too, are experiencing an illness journey: their loved ones’ and their own. They are in the dual role of grieving and caring simultaneously. It is through this lens that they decide to call 911.
Palliative care training is essential for paramedics to respond appropriately in the home of someone needing a palliative approach. However, this training must encompass much more than ‘pain and symptom’ management directed at the patient with the illness. It requires an ‘urgent holistic assessment’, which is very different from the standard paramedic response. The old axiom, ‘know your audience’, comes to mind. Know whom you are responding to.
Paramedics must ask themselves who in the home is suffering? Have they been called because the patient is in crisis, or is the family/caregiver in distress? Accordingly, they should refrain from ‘taking immediate action’ on arrival. Instead, they should walk slowly into the home, pull up a chair, and sit to listen patiently while the ‘first responder’, gives a report.
1. Brazil K, Howell D, Bedard M, Krueger P, Heidebrecht C. Preferences for place of care and place of death among informal caregivers of the terminally ill. Palliat Med. 2005;19(6).
2. Tanuseputro P, Beach S, Chalifoux M, Wodchis WP, Hsu AT, Seow H, et al. Associations between physician home visits for the dying and place of death: A population-based retrospective cohort study. PLoS One. 2018;13(2):e0191322.
3. Rosa A, Dissanayake M, Carter D, Sibbald S. Community paramedicine to support palliative care. Progress in Palliative Care. 2021:1-5.