Friday, January 15, 2016

Navigating Hospice Care with a Reluctant Caregiver

by Lizzy Miles

A reluctant caregiver is a person who is unwillingly in the caregiving role for a hospice patient. There are shades of reluctance that a caregiver might have, and several ways in which caregivers’ feelings may be revealed in the course of hospice staff interaction.  It is not uncommon for many caregivers to have periods of reluctant moments. This article is about the caregivers whose feelings of reluctance are their primary emotions. We do not condemn any caregivers for their feelings, but rather identify that reluctant caregivers exist, and suggest ways in which we can navigate care along with these caregivers to provide the best care possible for the patient.

Reluctant Caregiver Themes

There are variations of the reluctant caregiver and these are not mutually exclusive categories. A reluctant caregiver can have multiple reasons why they resent their role. It is important to note that the categories themselves do not make a caregiver reluctant.

The Ex: The Ex can be an ex-spouse or even an ex-daughter in law. The Ex could still end up as the primary contact caregiver because Power of Attorney (POA) paperwork was never updated or because the patient never remarried.  Patients with this type of reluctant caregiver live in long term care facilities. The "ex" may still maintain financial responsibility for the patient, but might tell hospice team they are not emotionally connected and are only serving in the caregiving role out of a sense of responsibility.

The Out of Towner: Typically a child or a sibling, the Out of Towner finds it to be an inconvenience to be pulled in to hospice decision-making.  It is important to note there are family members who happen to live out of town who are highly engaged. The Out of Town reluctant caregiver would be the one who repeatedly expresses irritation or inconvenience related to being in a different city. If they do come into town to visit, they will convey that they come out of a sense of responsibility, rather than a desire to be with the patient.

Semi-Estranged: The Semi-Estranged caregiver is one who had not had close contact with the patient prior to the hospice admission, but is now compelled to be more involved due to patient’s declining condition. The semi-estranged may reveal past hurts with patient and often openly expresses resentment.

Obligated: The Obligated reluctant caregiver is a caregiver who is the obvious choice, but not necessarily the most willing. It is the spouse who is still married to the patient despite a history of abuse. The Obligated reluctant caregiver might be the one child of many that was designated POA, perhaps a last living relative, or an only child.

Overworked: The Overworked caregiver is one who expresses frustration with multiple situations pulling their attention. It could be a caregiver who has a busy job or the adult child of a patient with multiple responsibilities of family or other people who need care.

Lamenting: The Lamenting reluctant caregiver is one who is so distraught about the course of events with the decline of the patient that they withdraw from wanting to be involved in caregiving.  This could be the child of a patient with Alzheimer’s Disease who says the patient is not the person I used to know. The Lamenting reluctant caregiver might say something like, “I can’t bear to see him like this.”

Identifying the Reluctant Caregiver

At hospice admission, it may not be clear to the hospice team that they have a reluctant caregiver. Prior to admission, families often overestimate the amount of personal care support that will be provided by the hospice team. This can be compounded if there is misinformation given by friends or non-hospice health care providers. Reluctant caregivers are initially enthusiastic for hospice because they believe hospice will come in and take over so they do not have to do personal care.  The reluctant caregiver will be the first one to express dismay that hospice aides are not there “more.”  Often, because reluctant caregivers can be very vocal with their distress, they can be persuasive with hospice teams that aim to please.

Caregivers’ feelings of reluctance are soon revealed either directly or indirectly.  Directly, a caregiver may express discontent and frustration with outside caregiving support. They may complain about putting their own life on hold. The hospice social worker may hear about relationship issues the caregiver has had with the patient in the past.

Have you been waiting a while for the return phone call?
The passive, indirect expression of reluctance is potentially the biggest challenge to the hospice team.  It may be as simple as the caregiver not returning phone calls from hospice staff. On a more serious note, hospice staff may find the personal care provided to the patient at home is less than ideal. The caregiver may leave a bedbound patient alone for extended periods of time. The hospice team may find the patient’s Depends have not been changed for twelve hours. The caregiver may be verbally abusive towards patient. Often these situations turn into discussion in IDT meetings regarding the quality of care. We might discuss, "How bad does it need to be before hospice needs to report the family to Adult Protective Services (APS)?"

What Can We Do?

When “reluctance” presents itself as neglect

it is important for the hospice team to collaborate on ways to alleviate the situation. There are a lot of things to try before calling APS.  Question to ask:

•  Is the "neglect" due to lack of ability or lack of desire?
•  Is this a short-term situation that a caregiver respite would alleviate?
•  Has the social worker spoke with the caregiver about community resources?
•  Has the hospice nurse set expectations and/or provided education regarding patient personal care needs?
•  Does patient/caregiver have financial means to supplement care?*

*A side-note on the last question. The biggest challenge for me on this topic is the patient with a neglectful reluctant caregiver who doesn't qualify for aid, and yet doesn't want to spend money for private pay care. More often than not, these are adult children with a semi-estranged relationship with the parent.


If a reluctant caregiver is disengaged or overworked

These are the caregivers who do not answer the phone or do not return telephone calls.
•  Try to accommodate caregiver’s schedule restrictions
•  Prioritize information to convey
•  Coordinate with team to reduce number of contact messages
•  Do not ask for call back unless you need it

If caregiver feels disconnected from patient (Lamenting, Estranged)

The Lamenting or Estranged caregiver is usually the most vocal about their reluctance. These caregivers who seem to be the most receptive to psychosocial support when they are open about their emotional anguish.
•  Increase social worker telephone support to caregiver
•  Alleviate guilty feelings of lamenting caregiving by offering hospice volunteer visits to patient
•  Staff should listen and offer support but do not get caught up trying to fix or resolve situation.

The Future of Reluctant Caregivers

The number of reluctant caregivers is likely to increase as the Baby Boomer population ages.
•  More and more families are geographically separated.
•  Modern American life is composed of blended families.
•  The multi-generational family focus is rare.
•  Caregivers are often aging themselves and have their own health issues.

To provide the best care possible to the patient and family, we will need to continue to explore ways in which we can support our patients with these reluctant caregivers.


Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

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