End of Life Care: A Guide for Families

This article gives suggestions for a guide to give families to help them take care of their loved one in their final days.

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End of Life Care: A Guide for Families

It is always challenging to care for hospice patients. In some cases, they have suffered through a long debilitating illness, and we want their last days to be ones of peace and comfort. It is especially difficult for their family members to witness, especially once their loved one is bedridden. Most of the time, they feel helpless and lost.

The level of involvement from a home hospice nurse may vary depending on the state or the patient's insurance company. The hospice nurse may visit once a week to monitor the patient's condition, or a nurse may visit multiple times a week to assist with bathing and changing the patient. But what about all the days in between these visits?

Instructions for the family typically consist of encouraging comfort and relieving pain via oral analgesics. The rest they must figure out on their own. Usually, they are overwhelmed with caring for their ailing loved one, grieving their end, and juggling their everyday lives. The hospice patient's family may consist of twenty people or just one. Their concerns may seem basic, but they are very important. They will largely benefit from a structured guide to help them navigate and care for their loved one in their final days.

Guide for Families

Repositioning

Family members should be informed that their loved one should not stay in one position for an extended period to prevent pressure ulcers. Pressure ulcers would add more discomfort to the patient. It does not have to be a strict schedule of every two hours like it is in the hospital, but the patient cannot lie on their left side for two days, for example. A recommendation of every two to four hours, depending on the patient's comfort and condition, should be sufficient. The patient should rotate between being moved to their left side, right side, and their back. When repositioning, their pressure points should be relieved with a pillow; the pressure points include the sacrum, elbows, knees, and heels.

Toileting

Family members should give the patient opportunities to use the bathroom at regular intervals. They may not need reminding if the patient is conscious and coherent, as they will proactively seek to use the bathroom. However, if the patient is unconscious, their caretakers will have to check if they are soiled. This can be done at the same time as the patient is being repositioned.

Bathing

It is up to the family to determine how often to bathe their loved one; once to twice a week is a good place to start. It helps if the frequency is determined and scheduled so no one is racking their brain trying to remember the last time the patient was bathed.

Oral Care

It is important to perform oral care, especially if the patient is not eating or drinking. Oral swabs can be purchased online. Oral care should be performed once a day.

Documentation

Every action performed should be documented. This includes the last time the patient was turned, the last time they went to the bathroom or were cleaned, the last bath, and the last time the patient received medication. This is especially important when multiple people are taking care of their loved one. This can be done on a piece of paper, or even a white board that can be updated daily.

Taking Shifts

If there are multiple family members involved in the care, it is important to schedule shifts to avoid setting the responsibilities on one or two people and to help prevent burnout.  

End-of-life care looks different for everyone. A patient could be in hospice care for six months, one week, or even a day. At some point, though, the patient will be bedridden, and it is important for the family members to know how to care for their loved one. Outlining a guide on what tasks to perform each day will help prevent overwhelm and give families the confidence to provide the best care for their loved one in their final days.

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OcasioRN

About OcasioRN, BSN, RN

OcasioRN has 11 years experience as a BSN, RN and specializes in Lactation, postpartum, med/surg.

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Thank you for a very helpful, useful, article.

 

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Specializes in Lactation, postpartum, med/surg.

You’re welcome! I’m happy you found it useful ?

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Specializes in New Critical care NP, Critical care, Med-surg, LTC.

Very well written and would be a good resource for those navigating a difficult journey. 

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