Understanding Changes in Palliative Performance Scale in the Last Six Months of Life

Published on November 22, 2023

Updated on December 25, 2023

In the journey towards end-of-life care, understanding the Palliative Performance Scale (PPSv2) and its downward changes in the last six months can provide valuable insights for hospice caregivers, patients, and families. This article aims to break down these changes' month by month, offering guidance on what to expect during this crucial period.

Anticipating Changes: Month by Month

When someone is very sick and may die soon, they might not be able to do things like before. They might feel different or need more help. The PPSv2 is a tool that helps us know what kind of changes to expect. It looks at five things: how well they can walk, how much they can do, how much they can take care of themselves, how much they eat and drink, and how awake they are. The PPSv2 gives a score from 0 to 100 for each person. The lower the score, the more changes they have.

The PPSv2 can help us plan the best care for the person who is extremely sick. It can also help us talk to them and their family about what they want and need. The PPSv2 can show us how fast or slow the person's condition is changing. Sometimes, the score can help us guess how much time they have left. But it is not always accurate, because every person is different. The PPSv2 is not the only tool we use. We also observe the person and listen to them and their family. We want to make sure they are comfortable and supported.

Approximately six months from death

  • High Functioning: At the start of month six, patients often have higher PPS scores, indicating relatively better functional abilities. This means they can still do many things by themselves, such as walking, eating, dressing, and bathing. They may also be able to participate in some activities that they enjoy, such as reading, watching TV, or spending time with family and friends.
  • Communication: It's important to maintain open communication with patients and families about potential changes in the coming months. You should talk to them about their goals, preferences, and fears. You should also explain what is and how it can help them. You should listen to their questions and concerns and answer them honestly and respectfully. You should also encourage them to express their feelings and emotions and offer them support and comfort.

Approximately five months from death

  • Gradual Decline: PPS scores might show a gradual decline by this point, indicating a decrease in functional abilities. This means they may need more help with some tasks, such as getting in and out of bed, using the bathroom, or taking medications. They may also have more symptoms, such as pain, fatigue, nausea, or . They may also lose interest in some activities or have trouble concentrating or remembering things.
  • Symptom Management: Focus on symptom management and addressing to ensure patients' comfort and well-being. You should assess their symptoms regularly and use medications, therapies, or other interventions to relieve them. You should also monitor their , such as blood pressure, pulse, temperature, and oxygen level. You should also check for any signs of infection, bleeding, or other complications and report them to the hospice team.
  • Support: Provide emotional support to both patients and families as they navigate these changes. You should acknowledge their feelings and emotions and validate them. You should also reassure them that they are not alone and that you are there to help them. You should also help them cope with stress, anxiety, or depression by using relaxation techniques, counseling, or spiritual care. You should also help them maintain their sense of dignity, identity, and purpose by respecting their values, beliefs, and wishes.

Approximately four months from death

  • Further Decline: PPS scores may continue to decrease, reflecting a more significant decline in functional status. This means they may become more dependent on caregivers for most tasks, such as eating, drinking, or personal hygiene. They may also have more severe symptoms, such as pain, confusion, agitation, or hallucinations. They may also have changes in their appearance, such as weight loss, skin breakdown, or swelling.
  • : Prioritize measures, such as and psychosocial support, to enhance the quality of life. You should use medications, therapies, or other interventions to control pain and other symptoms. You should also use comfort measures, such as massage, music, aromatherapy, or touch, to soothe and calm them. You should also provide a comfortable and peaceful environment, such as adjusting the lighting, temperature, or noise level, to promote rest and relaxation.
  • Education: Educate families about the progressive nature of the disease and the importance of holistic care. You should explain to them what to expect in the coming weeks and months and how to prepare for them. You should also teach them how to provide care to the patient, such as how to turn, position, or lift them, how to prevent bedsores or infections, or how to administer medications or treatments. You should also inform them about the available resources and services, such as , bereavement support, or financial assistance, that they can access.

Approximately three months from death

  • Greater Dependence: Patients might become more dependent on caregivers due to declining functional abilities. This means they may need constant care and supervision, such as feeding, changing, or bathing. They may also have difficulty communicating, such as speaking, hearing, or understanding. They may also have limited awareness, such as recognizing people, places, or time.
  • Holistic Approach: Adopt a holistic approach to care, addressing physical, emotional, and spiritual needs. You should treat the patient as a whole person, not just a disease. You should respect their individuality, personality, and history. You should also honor their culture, religion, and traditions. You should also help them find meaning, hope, and peace in their life.
  • Caregiver Support: Offer support and resources to caregivers, recognizing their vital role in the patient's journey. You should acknowledge their efforts, challenges, and sacrifices. You should also appreciate their strengths, skills, and knowledge. You should also help them balance their own needs and the patient's needs, such as taking breaks, getting enough sleep, eating well, or exercising. You should also help them cope with their emotions, such as guilt, anger, or grief, by providing counseling, support groups, or spiritual care.

Approximately two months from death

  • Limited Mobility: PPS scores may indicate limited mobility and self-care abilities. This means they may be bedridden or chair-bound, requiring assistance for all movements. They may also have impaired vision, hearing, or . They may also have reduced appetite, thirst, or bowel and bladder function.
  • Personalized Care: Tailor care plans to each patient's unique needs and preferences, promoting dignity and comfort. You should ask them what they want and don't want, such as medications, treatments, or interventions. You should also respect their choices and decisions, even if they differ from yours or the medical teams. You should also involve them in their care as much as possible, such as asking for their consent, feedback, or suggestions.
  • Advance Care Planning: Engage in advance care planning discussions to ensure patient wishes are respected. You should discuss with them their goals, values, and beliefs regarding end-of-life care. You should also help them complete advance directives, such as living wills, health care proxies, or do-not-resuscitate orders. You should also communicate their wishes to the hospice team and other health care providers.

Approximately one month from death

  • Critical Stage: Patients may reach a critical stage with significantly reduced functional abilities. This means they may have minimal or no response to stimuli, such as sound, touch, or pain. They may also have irregular breathing, pulse, or blood pressure. They may also have signs of impending death, such as mottled skin, cold extremities, or Cheyne-Stokes respiration.
  • Focus on Comfort: Shift the focus entirely to comfort and quality of life, minimizing interventions with limited benefits. You should discontinue any medications, treatments, or procedures that are not essential or effective. You should also avoid any actions that may cause or distress, such as moving, suctioning, or testing. You should also provide comfort measures, such as moistening the mouth, applying lip balm, or elevating the head, to ease any discomfort.
  • Family Engagement: Continue involving families in decision-making and providing emotional support. You should inform them of the patient's condition and prognosis and what to expect in the final days and hours. You should also respect their wishes and preferences regarding the place and manner of death. You should also help them say goodbye to the patient and express their love and gratitude. You should also prepare them for the death and the aftermath, such as notifying others, arranging the funeral, or coping with the loss.

Empowering Patients, Caregivers, and Nurses

Understanding these changes empowers patients, caregivers, and nurses to anticipate and provide appropriate care. By recognizing the expected , caregivers can plan assistance accordingly, ensuring the patient's comfort and dignity throughout the end-of-life journey.

Conclusion

Understanding the anticipated changes in the (PPSv2) over the last six months of life is crucial for hospice caregivers, patients, and families. By addressing these changes with empathy and providing holistic care, we can ensure that patients experience a comfortable and dignified end-of-life journey.

Resources

The Palliative Performance Scale (PPSv2) Version 2

PPSv2 QA Instructions and Definitions – Victoria Hospice

Using the Palliative Performance Scale to Estimate Survival – NCBI

Palliative Performance Scale and Survival Study – BMC Palliative Care

Palliative Performance Scale Systematic Review – ResearchGate

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

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