I recently surveyed a hospice team about their attitudes and understanding about patient self-determination.
Overall, the results were positive. When it came to spiritual care and DNRs, all but a minute minority chose answers that prioritized the patient’s right to choose. All of the 24 respondents answered that they would respect a family’s wishes to decline the chaplain’s service. Only three respondents selected answers that involved encouraging families to get a DNR. Twenty-one indicated the belief that our job is to educate about DNRs, but not encourage.
Disagreement regarding funeral home planning
When it came to funeral homes, however, the survey showed a much bigger difference of opinion, with a large chunk of respondents indicating a belief that funeral homes must be chosen before patients die.
The question was:
Which of the following statements are true concerning funeral home arrangements? Choose all that apply.
Below are the answers to choose from with the number of people who chose each one.
- ”The hospice team is responsible to make sure a funeral home is chosen for each patient.” 6 chose this one.
- “The social worker is responsible to make sure a funeral home is chosen for each patient.” 5
- “The hospice team is responsible to inquire about end-of-life planning.” 18
- “The hospice team is responsible to educate regarding funeral options as needed.” 14
- “When a funeral home has not been chosen, a member of the hospice team should check in with the family about the decision every month until a decision is made.” 9
- “Some patients may indicate that they do not want to discuss funeral home arrangements, and team members should respect this.” 15
Naturally, a majority responded that hospice inquires about end-of-life planning. This is a standard part of initial assessments for social workers, and marketers and admission nurses often ask at the start of care as well. And it makes sense that a majority responded that we educate about options. We do provide that education when it’s needed.
Michael Giles is a hospice social worker and psychotherapist who works in Austin and Cedar Park, Texas. Also by Michael: The secret to strong and effective boundaries
And a majority selected the answer stating that we respect a patients’ decisions when they indicate they do not want to discuss funeral homes. That’s a win for self-determination.
But it’s significant that the other responses were chosen as much as they were. 25% of respondents chose the response that the hospice team is responsible to make sure that a funeral home is chosen. 21% say it’s specifically the social worker’s responsibility. 38% say the team needs to follow up monthly with patients until the decision is made.
The problem with “making sure”
Despite the fact that it is entirely up to the patient or their family whether to choose a funeral home, a large portion of the hospice team believes we need to “make sure” it happens.
The phrase “make sure” implies that funeral home planning is mandatory, or at least urgent. If your boss tells you to make sure you hand in your report by the end of the day, you know your boss is not giving you the option of doing it only if it’s convenient. It makes it seem as if we require patients or families to make a decision.
The problem with persistently checking in about FH planning
This belief in “making sure” is aligned with the survey answer that we need to persistently revisit the topic of funeral homes with family members until they tell us their choice (selected by 38% of respondents). I’ve seen this attitude in every hospice I’ve worked in. Hospice administrators or directors urge social workers either to make sure a decision is made or document their attempts to get a decision made.
This philosophy is problematic for two reasons. First, it is unrealistic. It is not within the power of anyone other than a patient or their family to choose a funeral home. We cannot “make sure” that they do it, because we cannot make them do it. Whether or not they plan ahead with a funeral home is not our decision. It’s theirs.
The second problem is that our job is not to persuade patients or family members to do anything. We work for them. We can assess areas that need more education, and we can provide that education, but then our responsibility is to support their choices. If we are trying to get them to change their decisions, we are not supporting their decision.
Respecting “implied decisions”
If we remind someone every month of something we want them to do, there’s a good chance that they just don’t want to.
Consider other areas where people persist in trying to get a decision. If you say “now’s not a good time” to a telemarketer and hang up, did you really mean that you want the telemarketer to call you again later? Or if someone asks you out on a date repeatedly, and you give excuses about why you can’t, is it really true that “this week’s not good”?
Is it safe to say that if Joe asks you out in January, and then again in February, that you don’t need him to remind you in March that he’s interested? Don’t we hope that turning him down with excuses will lead to him dropping the topic?
When it comes to funeral home planning, it’s enough to assess, educate and advocate. We can communicate that families benefit by choosing funeral homes ahead of time. We can tell them it will help for us to know which one they’ve chosen. And depending on our relationship with the family or patient, we may feel it’s appropriate to restate our willingness to help with the task at some point in the future. But pushing beyond that can feel like nagging. Or harassment. Or that we are just not tolerating their internal emotional processes.
Is this justified pushing/nagging/harassing?
Hospice team members have told me that they understand patient self-determination, but… and then give a reason why choosing a funeral home before death is important enough that it has to happen anyway.
They’re right that families will benefit from choosing a funeral home. When your loved one has died, it’s the worst time to have to figure this out. And while it might be helpful to provide education about this benefit, it’s not our job to force this benefit on family members.
Another reason this issue can feel urgent to hospice workers is that it can make our jobs harder. Attending a death can already take up hours of a hospice nurse’s day or night. And the time they need to devote to a death can double when the family still has to choose a funeral home. This can increase the stress and pressure a nurse feels when there are other patients who need their attention, or when they’re looking forward to getting some rest at the end of a 16-hour night shift.
I don’t blame team members for their frustration when a lack of preparedness causes them more work. I can relate to this frustration. Almost every emergency I get involved with is the result of some poor planning. I only need to go into high gear when a family finally decides to get a DNR when they see the patient is actively dying, or when they say no to nursing home placement until the day they feel like snapping–or have a heart attack–and desperately need the patient placed. Yes! I like the social work meme, “Your bad planning is not my emergency.” But it’s not true. Their bad planning does become my emergency.
So when a patient dies without a funeral home, and the on-call nurse is mad, I empathize. Even if she’s mad at me. But it’s not the social worker’s fault. We can’t force decisions. And we shouldn’t push. All that’s left–all we can do–is to educate, support, and allow.
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