My heart fell when I opened my email this morning. The new patient I was scheduled to see at 10:45 AM had passed away in the night. This has happened to us too many times to count and it always hurts. If we’d only known, we tell ourselves, we would have made the visit happen sooner.
This is dangerous thinking that can lead to feelings of inadequacy and remorse for things beyond our control. In the field of end-of-life care, in fact, almost everything is beyond our control. What we’d like to offer are a few strategies for controlling what we can, along with encouragement to let go of the need to be there for every patient. It’s simply not possible.
Here are approaches we’ve found helpful.
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Prioritize your visits as best you can. Ask your referral sources to indicate if a patient is imminent. That patient can then be scheduled for your earliest opening.
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Reach out to the patient or family as soon as you receive the referral, even if there is a delay in how soon you can make the visit. The family will know that you are trying. Document that you have made contact, with the date you intend to provide the visit.
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Ensure that you have a timely way to be notified of patient deaths. We have unfortunately both arrived at visits (sometimes driving a long distance) only to be informed by the family that the patient has passed away. This is a painful scenario for grieving family members and reflects badly on communication between team members.
At our inpatient unit, a white butterfly is placed on the door when a patient dies, so that all staff are aware. In field settings, an email can be sent, or massage therapists can take it upon themselves to confirm visits in real time with the hospice team who should be the first to know about a death.
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Express condolences to the family in a way that feels appropriate. Once a visit has been scheduled with the family, a relationship and expectation of service have been established. A phone call or a sympathy card lets the family know that the visit was important to us, and that we are sorry for their loss.
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Resist creating a story starting with the word “I.” This includes “I should have,” “I wish I,” and “If only I.” The gist of these messages is that we are not doing enough. I don’t know anyone in end-of-life care who is not doing enough! In fact, we are likely already doing too much. As humans, we have a right to attend to our own needs for rest, recreation, and reasonable work hours.
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Accept that we will not be able to attend to every person who might want our services. Some people will die before we can provide massage for them. This is a reality that we can’t control or change. One of our esteemed colleagues shares that she finds it helpful to turn this issue over to a Higher Power, asking that God (Spirit, the Universe) help guide her to the people who need her most. This helps her to feel that she is seeing the clients she is meant to see, and to trust that the others received what they needed to complete their journeys.
