Written by CL Smith
When I started researching the Palliative Performance Scale and fell down the rabbit hole that is called Google, I had no idea that the PPS could be used for more than a physical progression scale. That it could be used to develop your personalized care plan for your end-of-life journey was exciting to me.
The problem with Dr. Google (as we call it in the healthcare field), is that most descriptions on how to use the PPS is written with complicated medical terms and descriptive words that confuses rather than enlightens a person. Somehow, we in the healthcare team can gloss over the most important member of our team.
You.
That is why in my endless fall down the rabbit hole of great information, I try to pare things back to the essentials. The Palliative Performance Scale can be a valuable psychosocial tool for you and your healthcare team to develop your individualized care plan.
The first step is to assess your functional status using Palliative Performance Scale (PPS). To know how to use the Palliative Performance Scale, see the article https://www.qdhpca.org/post/what-is-the-palliative-performance-scale-part-1
The second step is to figure out what domain you are currently in. Are you Stable (PPS 70-100%), Transitional (PPS 40-60%), or End-of-Life (PPS 0-30%)?
Within each Domain, there are eight realms of care planning considerations to think about. Each realm has a list of questions that you don't have to necessarily answer, but are food for thought as you and your loved go through your palliative journey.
There is a downloadable, printable link at the end of this article so you can print out and go through each realm step by step. Print out this out and ruminant as to what you would like your Care Plan to look like. Personally, I find the bathroom is where I do my best thinking and have a copy just laying on top of my comic books and sheep magazines. Treat it like a crossword and do a question a day.
As you progress through your journey, look back at the questions. Are they still relevant or has things changed? By taking charge of your care plan, you help us get you the help you need.
The Edmonton Symptom Assessment System (ESAS) is a common symptom, self-screening tool that is referenced in this article and a future article will be coming on how to use this tool
1. Disease Management
Step 1: Assessment (Stable, Transitional, and End-of-life Stages)
What is your diagnosis?
What is co-existing diseases do you currently have?
What co-existing illnesses may result from your primary diagnosis?
What is your prognosis?
What is your plan of treatment?
What is your current PPS score?
Have you review your prognosis, medical tests, goals of care, and plan of treatment with your healthcare team and your alternate decision maker?
Will your physician make home visits?
Step 2: Information Sharing (Stable, Transitional, and End-of-life Stages)
What is still unclear for your in your diagnosis and prognosis?
Who do you want to share this information with? When? How?
Step 3: Decision-Making (Stable, Transitional, and End-of-life Stages)
Will your decision-making skills be hampered by your disease?
Have you decided on an alternate decision decision maker if you cannot make your own decisions? https://www.qdhpca.org/advance-careplanning
Who have you decided to make your alternate decision maker?
Have you decided on the setting for your care? (ie, home, hospital, hospice)
Have you reviewed your Resuscitation status and discussed with your physician?
Have you decided on which treatments you want, don't want, and when to withdraw treatment
Have you told your physician and alternate decision maker about which treatment you want, don't want, and when to withdraw treatment?
Step 4: Care-Planning (Stable, Transitional, and End-of-life Stages)
Do you have a plan of treatment based on your values and mutually determined goals of care with your healthcare team?
Step 5: Care-Plan Delivery (Stable, Transitional, and End-of-life Stages)
Who is your healthcare team?
Who is the healthcare team member that will coordinate your care plan?
Do your family and informal caregivers have all the pertinent information?
Who will communicate the plan of care when there is a transfer to a new setting? (ie. hospital)
Step 6: Confirmation (Stable, Transitional, and End-of-life Stages)
Does everyone pertinent to your care-plan (family/healthcare team/you) understand the disease and are satisfied with the current plan of treatment?
2. Physical
Step 1: Assessment (Stable, Transitional, and End-of-life Stages)
Have you been taught how to use the Edmonton Symptom Assessment System (ESAS) screen for and monitor symptoms?
Are you able to use the Edmonton Symptom Assessment System (ESAS)?
Has your physician/primary care nurse done a comprehensive physical and symptom assessment lately?
How is your appetite, fluid intake, skin integrity, mobility, bowel/bladder routine and pain changed?
Have you and you healthcare team reviewed and reevaluated the need for routine assessments (e.g. vital signs, blood glucose)
How is your swallowing ability?
Step 2: Information Sharing (Stable, Transitional, and End-of-life Stages)
Have you shared your symptoms with your healthcare team?
Has your healthcare team talked to you about the physiological changes that come with the progression of your disease (e.g., appetite, hydration, fatigue)?
Step 3: Decision-Making (Stable, Transitional, and End-of-life Stages)
Have you decided on your goals and what is a priority for you?
Have you been informed or and signed for treatments you would like?
Have you decided on what your end-of-life care will look like for you (e.g., palliative sedation, artificial hydration)?
Step 4: Care Planning (Stable, Transitional, and End-of-life Stages)
If your symptoms become complex, does your healthcare team know who to consult? Do you?
Does your healthcare team know and have resources to help support you in your journey?
Have they communicate who the support services would be and how to contact them?
Do you have a flexible plan of treatment that:
addresses your diseases symptoms?
respects your choices, culture and values?
addresses issues that may come up in the future (e.g., escalating symptoms)
anticipates potential complications
What are the care plan adjustments that you may need as you reach end of life (e.g. turns every 2 hours only if tolerated, frequent mouth care, supportive surfaces)?
Step 5: Care-Plan Delivery (Stable, Transitional, and End-of-life Stages)
Do you have all the information, resources and supplies required to manage your physical care (e.g., contact information list)
Have you and your caregiver been taught how to execute your plan of treatment (e.g., medication administration)?
Have you thought about alternative routes for medication administration (e.g., oral to subcutaneous butterfly or IV infusion)?
What would be needed for a crisis (e.g. symptom response kit, dark towels available for hemorrhage)?
Step 6: Confirmation (Stable, Transitional, and End-of-life Stages)
Are you satisfied with the plan of treatment?
3. Psychological
Step 1: Assessment (Stable, Transitional, and End-of-life Stages)
Have you been taught how to use the ESAS to screen and monitor for depression, anxiety and well-being?
Have you identified the following:
Strengths &vulnerabilities
Emotional and behavioral responses
Methods of coping
Realistic and unrealistic expectations
Previous losses
Level of tolerance for inconsistency and changes in the plan of treatment
Conflicted relationships
Have you reviewed your ESAS scores for anxiety, depression and well being to identify any psychological issues of concern?
Does your caregiver know how to watch for subtle conversation cues that may reflect anxiety, depression and fear (e.g., “I am tired of this …”)?
Do you and your caregiver know how to watch for behavioral cues that may reflect anxiety, depression, and fear (e.g., withdrawn, facial expression)?
Step 2: Information Sharing (Stable, Transitional, and End-of-life Stages)
Have you defined your confidentiality limits with your healthcare team and caregivers?
Are you prepared for open discussion of topics such as withdrawal of treatment, MAID, etc.?
Have you provided clear and consistent responses in regards of how you want your end-of-life care-plan to look like?
Have you identify the need for team meetings?
Step 3: Decision-Making (Stable, Transitional and End-of-life Stages)
Have you tried complementary therapeutic interventions to help with your mental well-being (e.g., music therapy, massage, guided imagery)?
Step 4: Care-Planning (Stable, Transitional and End-of-life Stages)
Have you designed a customized, flexible plan of care that:
Addresses psychological issues (e.g., fears, anger, etc.)
Respects your choices, culture, values, beliefs, personality
Supports your desire for control, independence, and intimacy
Have you considered referral to a support group, Social Work/Mental Health/Spiritual/ Pastoral Care Consultant, Hospice and other volunteers?
Step 5: Care-Plan Delivery (Stable, Transitional and End-of-life Stages)
Does your care-plan promote a comfortable and private setting?
Are you and your healthcare team sensitive to changes that may cause anxiety?
Step 6: Confirmation (Stable, Transitional and End-of-life Stages)
Are you satisfied with your psychosocial care plan?
4. Social
Step 1: Assessment (Stable, Transitional and End-of-life Stages)
How has your diagnosis and prognosis impacted your family unit?
Have you identify issues related to:
Conflicted relationships
Mental health
Socio-economic status
Have you identified the need for assistance with financial and legal affairs?
Have you identified current and potential support systems?
Have you addressed the changes in roles and the impact within family unit (e.g., caregiver strain and fatigue, lack of privacy/intimacy)?
If your children are still at home, have you talked to them about their comfort level with your diagnosis and prognosis?
Have you identified any potential issues regarding isolation, abandonment, and conflicted relationships?
Step 2: Information Sharing (Stable, Transitional and End-of-life Stages)
Have you been provided with information about available local resources?
Has anyone shared information with you about about advance care planning? https://www.qdhpca.org/advance-careplanning
Are you and your family aware of available compassionate care benefits for palliative patients? https://www.qdhpca.org/links
Step 3: Decision Making (Stable, Transitional and End-of-life Stages)
Have you identified your social priorities and goals (e.g., financial, relationship, legal)?
Have you organized family/close friends into shifts to prevent caregiver burnout?
Step 4: Care-Planning (Stable, Transitional and End-of-life Stages)
Have you thought of some activities that could strengthen family bonds? (e.g., reminiscence, life review)
Have you considered talking to a Social Worker, Legal/Financial Consultant, Hospice and other volunteer programs, First Nations and other cultural groups?
Have you thought about scheduling of visitors or a time frame for when visitors so you don't get overwhelmed or exhausted?
As the end of your life becomes imminent, are you going to restrict this time to close family and friends only?
Step 5: Care-Plan Delivery (Stable, Transitional and End-of-life Stages)
Does your care-plan respect your culture, values, beliefs, personality and preferences?
Have you discussed with your caregivers how to maintain a calm, peaceful and comfortable environment for your end-of-life?
Have you discussed with your caregivers how they can maintain meaningful interactions with you without the expectation of a response when your end of life is imminent?
Step 6: Confirmation (Stable, Transitional and End-of-life Stages)
Are you satisfied with your social care plan?
5. Spiritual
Step 1: Assessment (Stable, Transitional and End-of-life Stages)
Have you explored the following:
The meaning of life, death and preparedness for your illness process
Your relationships
The concept of anticipatory grieving
Your hopes and fears
How to sustain and supportive your beliefs and practices
Step 2: Information Sharing (Stable, Transitional and End-of-life Stages)
Have you set aside to time for uninterrupted conversations with your loved ones about your diagnosis, prognosis, fears, goals, and spiritual needs
Step 3: Decision Making (Stable, Transitional and End-of-life Stages)
What are your options to help support your spiritual healing (e.g., journaling, meditation, music)
How are your going to incorporate meaningful rituals and devotional practices throughout your illness?
Step 4: Care-Planning (Stable, Transitional and End-of-life Stages)
Do you have a customize, flexible plan of treatment that:
Respects of your culture, values, beliefs
Incorporates meaningful icons, symbols, rites and rituals
Promotes an environment conducive to reflection, compassion, transcendence and peace
Acknowledges hope
Reframes goals into achievable tasks
Have you contacted your Pastor or Spiritual Advisor?
Step 5: Care-Plan Delivery (Stable, Transitional and End-of-life Stages)
Does your caregivers and family know how to talk to you during sensitive discussions (e.g., avoiding uncomfortable conversations with quick fix responses and religious clichés)?
Is there someone you can have mediate sensitive discussions for you and your family/caregivers that are struggling with their communication style?
Do you have someone that will listen as you tell your story?
Step 6: Confirmation (Stable, Transitional and End-of-life Stages)
Are you satisfied with your spiritual care plan?
6. Practical
Step 1: Assessment (Stable, Transitional and End-of-life Stages)
How are you doing with your activities of daily living?
Are you able to meet your children's needs?
Are you able to meet your caregiver's needs as they help you with your needs?
Step 2: Information Sharing (Stable, Transitional and End-of-life Stages)
Are you and your caregivers aware of local community resources available to you? https://www.qdhpca.org/links
Step 3: Decision Making (Stable, Transitional and End-of-life Stages)
Which services and resources are you and your family ready for?
Step 4: Care-Planning (Stable, Transitional and End-of-life Stages)
Do you have a care plan that helps you maintain your independence for as long as possible (e.g., transfer techniques)?
Do you have access to equipment (e.g., raised toilet seat, walker)?
Do you have referrals to resources such as physiotherapy and occupational therapy, if needed?
What equipment, support needs and follow-up with change in setting of care (e.g., hospital to home) will be needed in the future?
Step 5: Care-Plan Delivery (Stable, Transitional and End-of-life Stages)
Does your care plan promote a consistent, consensual and coordinated plan?
Have you told your caregiver, family, and healthcare team about any changes to your care plan?
Step 6: Confirmation (Stable, Transitional and End-of-life Stages)
Are you satisfied with your practical care plan?
7. End-of-Life Care and Death Management
Step 1: Assessment (Stable, Transitional and End-of-life Stages)
Are you monitoring the stress and burden being experienced by your caregivers so that you can prevent burnout?
Do you have resources and supports in place for you and your caregiver?
What is you resuscitation status? Does it need to be reviewed?
Do you and your family/caregivers know and what they don’t know (e.g., prognosis, dying process)?
Assessment (Transitional and End-of-life Stages)
Do you and your family/caregiver understand and are prepared for death (i.e., assess needs of child of dying family member)?
Step 2: Information Sharing (Stable, Transitional and End-of-life Stages)
Have you and your family/caregivers explore and discussed any questions you may have with your healthcare team?
Are you and your family/caregiver aware and prepared for the physiological changes expected in the last hours of life?
Have you explored the benefits and burdens of interventions, such as artificial nutrition or hydration, antibiotics, and transfusions?
Step 3: Decision Making (Stable, Transitional and End-of-life Stages)
What are your goals and expectations of care?
Have you decided on where you want ongoing care delivered and determine if family/caregiver is able and willing to participate in end-of- life care?
Have you thought of alternatives if your caregiver/family is unable or unwilling to participate in end-of-life care?
Step 4: Care-Planning (Stable, Transitional and End-of-life Stages)
Have you develop a plan with your family and caregiver in regarding access to 24/7 telephone support?
Have you confirmed the resuscitation status and completion of the MOST form with your physician? https://www.qdhpca.org/advance-careplanning
Have you discussed with your family/caregiver the (in)appropriateness of calling 911 when death has arrived?
Have you develop a plan of treatment that addresses symptoms, such as upper airway secretions, restlessness, or delirium?
Have you developed a plan for expected death, including:
Your desired setting of care, rites and rituals around death (e.g., bathing and dressing, prayers)
How and to whom the death will be communicated
Who will pronounce and certifying the death
Funeral, celebration of life service, or memorial plan
Who notifies the the funeral home
Step 5: Care-Plan Delivery (Stable, Transitional and End-of-life Stages)
How are you and your family/caregiver going to provide a calm, peaceful and comfortable environment when end-of-life is imminent?
At the time of death, who will implement your pre-determined plan?
Step 6: Confirmation (Stable, Transitional and End-of-life Stages)
Are you satisfied with your end-of-life and death management care plan?
8. Loss & Grief
Step 1: Assessment (Stable, Transitional and End-of-life Stages)
Are you and your loved ones prepared for death?
Have you identified and acknowledged previous losses?
Have you identified and acknowledged previous and current coping techniques (e.g., exercise, substance use)?
Have you identified and acknowledged those who may be at risk for complicated grief (e.g., multiple unresolved losses, death of a child)?
Step 2: Information Sharing (Stable, Transitional and End-of-life Stages)
How can you encourage expression of feelings and emotions in yourself, your family/friends, and your caregivers?
Have you discussed the grieving process and anticipatory grief with your loved ones?
Step 3: Decision Making (Stable, Transitional and End-of-life Stages)
Have you determined and helped find support for loss and grief?
Step 4: Care-Planning (Stable, Transitional and End-of-life Stages)
Have your incorporated meaningful cultural, spiritual rites and rituals (e.g., gift giving, legacy creation, memory boxes, hand casts)?
Do you have access to contacts for appropriate Health Care Providers for assistance with advanced interventions (e.g., suicidal ideation)? https://www.qdhpca.org/grief-bereavement-services
Step 5: Care-Plan Delivery (Stable, Transitional and End-of-life Stages)
Have you access to age appropriate resources for those who are grieving?https://www.qdhpca.org/recommended-readings
Step 6: Confirmation (Stable, Transitional and End-of-life Stages)
Are you satisfied with your loss & grief care plan?