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 on the journey toward end-of-life care. 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 tool 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 their wants and needs. The PPSv2 can show how fast or slow the person’s condition changes. Sometimes, the score can help us guess how much time they have left. However, this 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 alone, such as walking, eating, dressing, and bathing. They may also be able to participate in activities they enjoy, such as reading, watching TV, or spending time with family and friends.
Communication: Maintaining open communication with patients and families about potential changes in the coming months is essential. It would be best if you talked to them about their goals, preferences, and fears. You should also explain hospice care and how it can help them. You should listen to and answer their questions and concerns honestly and respectfully. You should encourage them to express their feelings and offer support and comfort.
Approximately five months from death
Gradual Decline: PPS scores might gradually decline by this point, indicating decreased functional abilities. This means they may need more help with tasks like getting in and out of bed, using the bathroom, or taking medications. They may also have more symptoms, such as pain, fatigue, nausea, or shortness of breath. They may also lose interest in some activities or have trouble concentrating or remembering things.
Symptom Management: Focus on symptom management and addressing discomfort to ensure patients’ comfort and well-being. Assess their symptoms regularly and use medications, therapies, or other interventions to relieve them. Monitor their vital signs, such as blood pressure, pulse, temperature, and oxygen level. Check for signs of infection, bleeding, or other complications and report them to the hospice team.
Support: Provide emotional support to patients and families as they navigate these changes. Acknowledge their feelings and validate them. Reassure them that they are not alone and that you are there to help them. Use relaxation techniques, counseling, or spiritual care to help them cope with stress, anxiety, or depression. Respect their values, beliefs, and wishes to help them maintain their sense of dignity, identity, and purpose.
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.
Comfort Care: Prioritize comfort care measures, such as pain management and psychosocial support, to enhance the quality of life. You should use medications, therapies, or other interventions to control pain and other symptoms. It would be best to use comfort measures, such as massage, music, aromatherapy, or touch, to soothe and calm them. To promote relaxation, you should also provide a comfortable and peaceful environment, such as adjusting the lighting, temperature, or noise level.
Education: Educate families about the progressive nature of the disease and the importance of holistic care. You should explain what to expect in the coming weeks and months and how to prepare for them. It would be best if you also taught them how to provide care to the patient, such as how to turn, position, or lift them, prevent bedsores or infections, or administer medications or treatments. It would be best to inform them about the available resources and services they can access, such as respite care, bereavement support, or financial assistance.
Approximately three months from death
Greater Dependence: Due to declining functional abilities, patients might become more dependent on caregivers. 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. Treat the patient as a whole person, not just a disease. Respect their individuality, personality, and history. Honor their culture, religion, and traditions. Help them find meaning, hope, and peace.
Caregiver Support: Offer support and resources to caregivers, recognizing their vital role in the patient’s journey. Acknowledging their efforts, challenges, and sacrifices would be best. You should also appreciate their strengths, skills, and knowledge. You should also help them balance their 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 taste. 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. It would be best to discuss their goals, values, and beliefs regarding end-of-life care with them. You should also help them complete advance directives, such as living wills, health care proxies, or do-not-resuscitate orders. It would be best to communicate their wishes to the hospice team and other healthcare 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. It would be best to avoid any actions that may cause discomfort 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 discomfort.
Family Engagement: Continue involving families in decision-making and providing emotional support. It would be best to inform them of the patient’s condition, prognosis, and what to expect in the final days and hours. It would be best if you also respected their wishes and preferences regarding the place and manner of death. You should also help them say goodbye and express their love and gratitude to the patient. It would be best if you also prepared 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 functional decline, 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 Palliative Performance Scale (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 the patient experiences a comfortable and dignified end-of-life journey.
