As serious illness progresses, an individual’s body functions may change as systems weaken. This may include physical changes, cognitive changes, and behavioral changes. As families navigate the profound and challenging journey of the final weeks and days with a loved one in hospice care, anticipatory guidance becomes an invaluable source of support. Knowing what you can expect can help you create a proactive plan in conjunction with your hospice team to appropriately prepare.

 

How Much Time is Left?

This is a common question hospice nurses and doctors are asked. One of the most challenging aspects of facing the final weeks and days of a loved one’s life is the uncertainty surrounding how much time is left. As each individual’s journey with a serious illness is unique, predicting the exact duration can be complex. However, understanding the signs and factors that may indicate the progression towards the end of life can provide families with valuable insights for preparation.

The hospice team can help play a crucial role during this time, offering invaluable insights into disease drawing from their expertise and evaluating progression based on the illness. While no prediction can be a guarantee, the hospice team can offer a general understanding of the individual’s health trajectory and what to expect in the coming weeks. Understanding that different diseases follow different paths in the final months and weeks is crucial. Some illnesses may exhibit a more predictable decline, while others may involve periods of improvement or stability. Regardless of the disease, complications can sometimes arise, resulting in a more rapid decline than initially expected.

Preparing: Open Communication

Open and proactive communication about preferences and end-of-life decisions is paramount for ensuring that an individual’s wishes are respected and honored. Having these conversations ahead of time, while the individual is still able to express themselves, fosters a deeper understanding of their values, desires, and priorities. It provides an opportunity for the individual to articulate their medical treatment preferences, quality-of-life considerations, and any specific cultural or spiritual beliefs that should be taken into account. This preemptive dialogue not only empowers the individual to have agency over their healthcare decisions but also serves as a guide for family members and healthcare providers. By engaging in these discussions early on, families can navigate challenging decisions with clarity and unity, promoting a compassionate and person-centered approach to end-of-life care. Ultimately, the importance of such communication lies in fostering a sense of dignity, autonomy, and peace for individuals as they approach this profound stage of life.

Topics to discuss may include:

• Nutritional Support & Feeding Tubes: Discuss preferences for the use of feeding tubes and nutritional support. Explore the benefits, challenges, and comfort levels associated with the decisions.
• Palliative Care & Pain Management Preference: Discuss preferences for pain management including the balance between alertness and comfort.
• Advance Directives: Discuss the creation of an advance directive for healthcare decisions, clearly highlighting preferences in multiple scenarios and spelling out one’s wishes.
• Goals of Care: Discuss the “quality of life” decision making and explore the comfort measures only approach and potential outcomes to learn desires.
• Burden & Benefit Discussions: Explore the burden of various treatment options versus the potential benefits. Discuss tolerance for treatment-related side effects and impacts on daily life to help make guided decisions.
• Timing & Circumstances of Decision-Making: Discuss when and under what circumstances certain decisions should be made. Explore preferences for ongoing communication and decision-making involvement by those around you.

Final Weeks and Days: Expected Changes

As individuals approach the final weeks and days of life, various physical and emotional changes are anticipated. Understanding these changes is crucial for both caregivers and families, providing a foundation for compassionate and informed end-of-life care. In this hospice education guide, we delve into the expected changes, offering insights into what to anticipate during this delicate journey.

Decreasing Energy:

A noticeable decline in overall energy and strength is a common feature in the final stages of life. Individuals may spend increased time in bed, and prolonged periods of sleep become more frequent. It’s essential for caregivers to recognize the importance of rest and provide comfort as needed

Changes in Appetite and Thirst:

A natural decrease in appetite and thirst is expected as the body undergoes changes. Body systems may slow down, and nutritional requirements may change as the individual becomes less active. Caregivers should understand that forcing someone to eat or drink may lead to discomfort, and it’s vital to focus on alternative means of providing comfort, such as music, touch, or the presence of loved ones. Forcing someone to eat or drink may cause nausea, vomiting, aspiration, abdominal discomfort, constipation, intestinal blockage and more. Furthermore, it may be discouraging to a loved one to be continuously reminded of their changing appetite.

Medication Adjustments:

Trouble swallowing medications is a common challenge in the final weeks and months. Caregivers should work closely with healthcare providers to explore alternative methods of medication delivery, ensuring effective pain management and symptom relief. Hospice providers have extensive knowledge in the various forms medications may be delivered, and can help determine what form is best for your specific situation.

Circulation and Skin Changes:

Diminished blood and oxygen flow can result in coolness in hands and feet, accompanied by changes in skin color that may appear as blotchy, purple patches especially noted on the extremities. Additionally, some may develop a fever during the final stages, and may require comfort-focused interventions such as acetaminophen or cool compresses.

Breathing Changes:

Alterations in breathing patterns often signal the proximity of death. Breathing may quicken, slow down, or involve pauses between breaths. Caregivers are encouraged to provide reassurance and monitor their loved one paying attention to body language to ensure comfort. Changing positions or  administering medication to help reduce the amount of saliva are interventions that can be completed if an individual appears uncomfortable.

Changes in Cognitive Function:

As the body weakens, alertness may decrease, leading to confusion in some individuals. Caregivers should approach confusion with patience and reassurance, avoiding correction of confused behaviors. The hospice team may be able to provide some direction and offer some strategies to help combat confusion.

Gastrointestinal Changes:

Decreased need for food and drink may lead to changes in bowel and bladder function. Hydration and nutrition changes can be common. Constipation management may become less of a priority, and caregivers should communicate with healthcare providers regarding comfort measures. Additionally, in the final weeks and days of one’s life, incontinent episodes may occur.

Periods of Alertness (Rallies):

In some instances, individuals may experience unexpected periods of alertness, commonly known as “rallies.” These brief moments can offer opportunities for meaningful interactions, and caregivers should be prepared to embrace these moments, even if they are short-lived.