A difficult end of life experience does not mean that the patient is experiencing a “bad death.” Depending on disease progression and patient choice end of life can be difficult. There is also a condition referred to as “terminal agitation/restlessness” which is not uncommon for any patient and is marked by restlessness, agitation, random body movements- from simply picking at the air to actual thrashing. All of these are a normal part of the dying process even though they can be very upsetting to the patient, their family, and the doula.
As a doula in a difficult end of life situation it is very important that you touch base with the patient, family, and hospice care team and make sure that there is not a need to change the care plan based on the symptoms you have observed. It is also important that you check in with yourself and adjust your self-care as needed.
Our work, even in difficult situations, is to be present and honor the patient’s own experience. However, in these difficult situations we do need to factor safety, both our own and our patient’s, into being present.
Safety: A patient’s safety will be dependent on them, but in very general terms it means that their experience does not have the possibility to re-traumatize, or traumatize them, cause them to harm themselves, or cause them to dissociate. Safe also means your own safety, both physical and mental.
Pain: When people are experiencing physical or emotional pain it can change their behavior. As doulas we simply meet them where they are and without judgement. It is also important to acknowledge and learn about the pain so as to honor the role of pain in the dying experience and do as little as possible to exacerbate it. Let the patient take the lead, and never turn away from bearing witness to their pain.
Traumatic visions/Flashbacks: As a doula is almost never our role to contradict what a patient is experiencing, even if we can not see, hear, or experience it for ourselves. But when the experience is not a pleasant one we, as doulas, must be aware of whether or not our patient is safe. If patient is seeing violent or upsetting visions, validate what the patient is seeing and ask them how they feel- follow the patient’s lead in discussing it. But, if the patient is upset or become fixated on their experience of the image then they are no longer safe. It can help to ask the patient to describe mundane details of the vision, by refocusing the patient’s attention on the details rather than the whole, it may be possible help them feel calmer or more safe.
For someone who has experienced trauma, these experiences may be more pronounced. If the experience causes the patient to revisit that trauma it may actually become necessary to reorient them to the present in order to keep them safe. Using tactile information is often helpful to gently reorient them to the space around them.
Anxiety/Paranoia: Other patients may just simply not feel safe. Our best tool is our ability to be with the patient and honor their experience without judgement or contradiction. We are not seeking to alter the patient’s experience, rather we are trying to ensure they are safe while having the experience.
Terminal Agitation/Restlessness: Terminal agitation/restlessness can occur in the weeks, days, and hours leading up to active dying. It can present in an innocuous way, such as repeatedly reaching towards the air or picking at clothing, or in a more difficult way, such attempting to move when it is not safe for the patient to stand on their own, or thrashing. It is important to note the onset of such behavior, as it is an indicator that the patient is nearing active dying. Do what you can to make the environment the patient is in safe. Never, ever, restrain the patient. It is rarely possible to reorient a patient who is experiencing terminal agitation/restlessness. There are medical interventions that are possible that can help restore the patient to safety, but they should only be used if they are in accordance with how the patient wants medical treatment at the end of life.
Conclusion: If we are honoring the patient as a person and their wishes for end of life care, then these experiences are simply a part of their dying process. As doulas we must honor them as such.