Hospice at the Holidays By: Jillian Lisiakowski, DNP, FNP-C, ACHPN

As the holiday season approaches, the weather begins to cool, seasonal activities begin, holiday gatherings occur, and family traditions are made. This is often a beautiful season spent with family and loved ones while sweet memories are made. However, the holiday season can also be very lonely and challenging for those going through complex health diagnoses or for those whose loved ones have passed. Despite the complicated feelings surrounding the season, the holidays can still be meaningful and memorable by supporting and including family members nearing the end of their lives and by reminiscing about and honoring those we have lost.

Hospice Care

Many families and individuals would prefer to discuss end-of-life care and hospice after the holiday season. Patients and families often hold on to the hope that they can “make it through the holidays,” delaying meaningful discussions and care decisions. Talking about poor prognosis, death, and dying is not something much of the population wishes to dwell on during this season. Hospice, however, can be a tremendous blessing during the holiday season to both families and patients due to the high amount of care and support provided by hospice programs. Hospice services include nurses who provide symptom management, education, and support to patients and their loved ones in the patient’s home. This increases the patient’s comfort level, which may allow the member to participate in family gatherings and can reduce caregiver distress. Even if the patient cannot leave their bed, controlled symptoms and adequate support can provide peace and comfort during this stressful time. Hospice aides can assist with basic care needs, including bathing, feeding, and emotional support. Social work and chaplain services can provide emotional and spiritual support to the family and patient during this difficult time. This extra support can allow patients and families to focus on things that are important to them, such as spending quality time together during the holiday season.

It is important to include family members nearing the end of their lives in family and holiday gatherings while also considering their wishes and how much activity they can tolerate. While some patients on hospice services are well enough to travel, many are not. Patients experiencing pain, shortness of breath, fatigue, or weakness may only be able to tolerate a short drive to a family member’s home. In contrast, others may be unable to tolerate leaving the house. Equipment such as oxygen concentrators and wheelchairs are often bulky and difficult to transport. Here are some tips for including your loved one in activities and gatherings during the holiday season.

1. Ask your family member about if they would like to participate in any holiday gatherings or activities. Some hospice patients may not feel up to having visitors or participating in activities.
2. Consider having family and friends visit the patient’s home instead of traveling.
3. It may be beneficial to have small, quiet gatherings to reduce the activity and stress on the patient.
4. Scheduling visitors around the patient’s nap times or medication schedule can allow the patient to feel more rested and have controlled pain while visiting with loved ones.

Having these discussions with your loved one can make them feel more in control and included during this already stressful season of life.

Managing emotions

While the holiday season is joyful for many, it can also be a time of sadness, pain, and distress. Individuals and families who have experienced the loss of a loved one may feel sorrow and grief as they feel their loved one’s absence in this season. Hospice patients may feel grief and dread as they approach what may be their last holiday. Patients’ families might experience sadness or anticipatory grief as they anticipate the loss of a loved one and their absence on future holidays.

The National Alliance on Mental Illness (NAMI)¹ found that 64% of those with mental illness have worsening symptoms around the holiday season. This can include things like worsening depression and anxiety. Some ways to manage these symptoms and pay tribute to those who have passed include:

1. Evaluating and accepting your feelings. Take time to consider your feelings and aim to accept them instead of feeling guilty about them.
2. Take time for yourself. This season can become overwhelmingly busy with activities and gatherings. Be sure to leave space in your schedule for both mental and physical rest.
3. Connect and remember. Take time to reach out to family or friends. Consider discussing your loved ones who have passed and reminisce on good or funny memories you have of that person.
4. Plan an activity. Perhaps your loved one enjoyed watching a certain holiday movie, baked a particular pie or holiday cookies, or had a favorite holiday tradition. Take time to plan an activity that they once enjoyed to keep their memory alive.

If you are a patient in hospice or someone with a loved one in hospice, take

time to pause and reflect on your thoughts and emotions during this time. Utilize hospice support, including social workers, chaplains, and nurses. They can often provide feedback, guided discussions, and an open ear to unload difficult emotions.  Try to take some time to call or visit your loved ones. Include your loved ones on hospice in activities or gatherings as they feel able. Easy activities they may enjoy include:

1. Watching a favorite holiday movie.
2. Listening to festive music.
3. Overseeing or assisting with baking holiday treats or preparing holiday meals.
4. Doing simple holiday crafts.
5. Reading holiday cards or looking at family pictures.

While the holidays can be challenging for many, taking small, intentional steps to process and acknowledge your emotions, involve your loved ones as they are able, and remember those who have passed can lead to a very special and meaningful holiday season.

References

1. Gillison, D. H. (2021, December 20). The Most Difficult Time of The Year: Mental Health During the Holidays. NAMI. https://www.nami.org/from-the-ceo/the-most-difficult-time-of-the-year-mental-health-during-the-holidays/