Hospice care is for individuals who are nearing the end of their lives. It’s typically recommended for people who are given six months or less to live. It focuses on providing comfort and improving quality of life. One key term you might hear in hospice care is “transitioning.” 

Language used in healthcare can often feel confusing, especially when it involves something as emotional and complex as end-of-life care. If you ever feel uncertain about the words your healthcare team uses, remember it’s okay to ask questions. 

Understanding these terms, such as “transitioning,” can help you feel more confident and prepared as you care for a loved one. In this article, we’ll review: 

• What “transitioning” means in hospice care
• Common changes while transitioning and how to help
• How to utilize the hospice team
• How to cope and plan during the end-of-life process

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Understanding What “Transitioning” Means In Hospice Care

In general, the term “transition” in healthcare can refer to a shift from one setting to another. For example, a person in palliative care might transition to hospice care when curative treatments are no longer helpful.

However, “transitioning” in hospice care has a special meaning. When doctors or nurses say a loved one is “transitioning,” they’re signaling that the person is nearing death. This phase is marked by physical, emotional, and cognitive changes that suggest the body is shutting down. Transitioning is a natural part of the end-of-life process, and it can last anywhere from a few days to weeks. Transitioning is the initial phase before active dying, which typically occurs in the final hours or days leading up to death.

Common Changes During The Transition & How To Help

As your loved one experiences transitioning in hospice, you’ll notice changes in their physical, mental, and emotional functioning. While these changes are normal, they can be difficult to witness. Here are some common changes and what you can do to provide support:

Reduced consciousness: In the final hours or days, the body begins to slow down and needs more rest. Your loved one may not communicate or be as active as they once were. 

• How to help: Stay by your loved one’s bedside. Speak gently, as they may still be able to hear you, even if they’re unresponsive. If your loved one isn’t getting out of bed or moving much, gentle repositioning can help reduce muscle stiffness and avoid discomfort from pressure sores.

Decline in appetite and thirst: Interest in eating and drinking usually decreases as the body’s need for nutrition fades. 

• How to help: Don’t push food or drinks. Keep their mouth clean with a damp cloth, and apply lip balm to avoid dryness. Maintaining good oral care can help them stay comfortable.

Body temperature & skin changes: Near the end of life, a person’s blood pressure and heart rate may change or drop. Their body temperature might fall, and their hands and feet may feel cold. You might also see changes in their skin color and texture.

• How to help: Keep blankets near the bed in case your loved one is cold. Don’t use heat packs, as their skin can be extra sensitive. 

Breathing pattern irregularities: Breathing may change, consisting of long pauses between breaths or shallow breathing. 

• How to help: You can adjust your loved ones positioning by raising their head with pillows or by turning them onto their side to make breathing more comfortable.

Cognitive changes: Confusion, restlessness, or agitation is common. People may be unaware of where they are or the situation they’re in.

• How to help: Stay calm and create a peaceful environment. You can add comforting smells or sounds.

Emotional and spiritual changes: Many people reflect on their life, death, or spiritual beliefs during the end-of-life transition. 

• How to help: Respect your loved one’s religious or cultural beliefs and provide spiritual support if needed. Give them space to express themselves freely and listen without judgment. Use the hospice resources available to you.

It’s important to remember that death is a unique experience, and each person will go through it in their own way. While these are the most common symptoms, they may not apply to everyone.

How To Utilize The Hospice Team 

The hospice care team supports you and your family during the end-of-life process, offering practical and emotional guidance. Here’s an overview of the key roles in the hospice team and how they can help:

Hospice Nurse & Physician: These healthcare professionals provide education about the dying process. They are the best people to ask specific questions to about your loved one’s comfort and care needs.

Spiritual Counselors & Chaplains: As many people face spiritual questions near the end of life, spiritual counselors offer emotional support and guidance. They can also help with planning funerals or memorial services, and this support is available to people of any faith.

Social Workers: Social workers support both the patient and their family. They advocate for the patient’s end-of-life wishes, help manage the emotional challenges of late-stage illness, and assist in finding additional local services and resources. Social workers also act as a bridge between the patient, family, and healthcare team, ensuring that everyone works together to provide the best care.

Bereavement Coordinator: After your loved one passes, the hospice team can continue to support your family. A bereavement coordinator can provide grief counseling and emotional support for up to 13 months, helping family members process their emotions and cope with loss.

How To Cope & Plan During The End-Of-Life Process

It’s hard to know what to expect if you’re told a loved one is transitioning, but preparing ahead of time can help reduce feelings of uncertainty. Planning while your loved one is still with you can also lessen the burden on you after they pass.

Say Goodbye

Understanding that a loved one is nearing the end of their life can be deeply emotional. However, saying goodbye, even if they’re no longer aware, can be an important part of the healing process. Take the time to express your feelings to them. While it may feel difficult or uncomfortable, later on, you may find comfort in knowing you shared your heart.

Prepare Finances

Though it’s not always a comfortable topic, it’s helpful to ensure their affairs are in order. For example, find out if they have a will, power of attorney, and whether they have specific wishes for a funeral or memorial service.

Take Care Of Yourself 

Caring for a loved one who is transitioning is emotionally and physically demanding. Be sure to take care of yourself during this time:

• Build a support system: Lean on family members, friends, or others who can offer emotional support.
• Maintain a routine: Continue getting enough rest, eating healthy meals, and keeping up with daily activities (for example, walking).
• Use available services: Take advantage of grief counselors, support groups, and resources provided by the hospice team.

Conclusion

Transitioning in hospice care refers to the period when a loved one is approaching the end of life. This is marked by physical, cognitive, and emotional changes. While it may feel overwhelming, hospice care is specifically designed to offer comfort, support, and guidance at every step. Despite the challenges, planning and seeking support can help ease the emotional and practical challenges of the end-of-life process.

References

1. Morey, Trevor, et al. “Transitioning from Hospital to Palliative Care at Home: Patient and Caregiver Perceptions of Continuity of Care.” Journal of Pain and Symptom Management, vol. 62, no. 2, Aug. 2021, pp. 233–241, https://doi.org/10.1016/j.jpainsymman.2020.12.019. Accessed 23 Aug. 2021.
2. Godfrey, Austin. “When Death Is Near: Signs and Symptoms – Hospice Foundation of America.” Hospice Foundation of America, 24 Sept. 2024, hospicefoundation.org/when-death-is-near-signs-and-symptoms. Accessed 19 Dec. 2024.
3. “Our Hospice Care Team: Delivering Comfort, Peace and Dignity.” Lower Cape Fear LifeCare, 25 Oct. 2024, lifecare.org/news-events/hospice-care-team-roles-explained/. Accessed 19 Dec. 2024.
4. Smith, Matt. “Understanding the Role of a Hospice Care Team.” Www.hebrewseniorlife.org, 2019, www.hebrewseniorlife.org/blog/understanding-role-hospice-care-team.