Marys Medicine

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 Irene Heinz – NP, NSM CCAC


Edmonton Symptom Assessment System:
Edmonton Symptom Assessment System:
(revised version) (ESAS-R) (revised version) (ESAS-R)
Please circle the number that best describes how you feel NOW:
(Tiredness = lack of energy) (Drowsiness = feeling sleepy) Shortness of Breath (Depression = feeling sad) (Anxiety = feeling nervous) (Wellbeing = how you feel overall) Other Problem (for example constipation) Completed by (check one): Patient's Name PatientDate _ Time Family caregiver Health care professional caregiver Caregiver-assisted BODY DIAGRAM ON REVERSE SIDE
Revised: November 2010 Please mark on these pictures where it is that you hurt:
Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Guidance for clinicians to support earlier identification of patients nearing the end of life and who
could benefit from a hospice palliative care approach
Why is it important to identify people nearing the end of life?

About 1% of the population dies each year. Although some deaths are unexpected, many more in fact can be predicted. This is inherently difficult, but if we were better able to predict people in the final year of life, whatever their diagnosis, there is good evidence that they are more likely to receive well-coordinated, high quality care. This Early Identification and Prognostic Indicator Guide aims to help family physicians, specialist physicians and nurse practitioners in earlier identification of those patients nearing the end of life who could benefit from a hospice palliative care approach to care. The tool has been adapted from the Gold Standards Framework (GSF) Prognostic Indicator Guidance1 tool developed by the GSF Centre in the UK. The UK has been using the tool along with a comprehensive education program to support GPs, care homes and general hospital staff in identifying patients and placing them on a register to help trigger specific support. Varying Disease Trajectories 2
Frailty, comorbidity, dementia Three triggers that suggest that patients could benefit from a hospice palliative care approach
1. The Surprise Question: ‘Would you be surprised if the patient were to die in the next year?'
2. General indicators of decline: deterioration, advanced disease, decreased response to treatment,

choice for no further disease modifying treatment.

3. Specific clinical indicators related to certain conditions.

Definition of Hospice Palliative Care3
Hospice palliative care is a philosophy of care that aims to relieve suffering and improve the quality of living
and dying. It strives to help individuals and families to:
 address physical, psychological, social, spiritual and practical issues, and their associated expectations,
needs, hopes and fears;  prepare for and manage self-determined life closure and the dying process;  cope with loss and grief during the illness and bereavement;  treat all active issues;  prevent new issues from occurring;  promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self- 1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre In End of Life Care CIC, 2011. Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Guidance for clinicians to support earlier identification of patients nearing the end of life and who
could benefit from a hospice palliative care approach

Ask the Surprise Question
Would you be surprised if the patient were to die in the next year?
Refer to details below Do they have
Reassess
General Indicators of Decline?
regularly
Refer to details below Do they have
Specific Clinical Indicators?
Refer to details below Reassess
regularly
Discuss advance
care planning
IDENTIFY Flag in patient's medical record with identified palliative care needs
Refer to CCAC Palliative Care Program ASSESS Assess patient and family needs (i.e. disease management, physical, psychosocial,
spiritual, functional status, goals of care)
Record goals of care/advance care planning discussions PLAN Participate as a member of the primary level palliative care team
If patient/family needs meet complexity criteria, discuss role of secondary level palliative care specialists, i.e. consultation, collaborative care/shared care, direct care 1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre In End of Life Care CIC, 2011. Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Guidance for clinicians to support earlier identification of patients nearing the end of life and who
could benefit from a hospice palliative care approach
More details of indicators – the intuitive surprise question, general decline and specific clinical

The Surprise Question
For patients with progressive life-limiting illness – Would you be surprised if the patient were to
die in the next year?
The answer to this question should be an intuitive one, pulling together a range of clinical, co-morbidity,
social and other factors that give a whole picture of deterioration. If you would not be surprised, then
what measures might be taken to improve the patient's quality of life now and in preparation for possible
further decline?
General Indicators of Decline
Are there general indicators of decline and increasing needs?

 Advancing disease – unstable, deteriorating complex symptom burden
 Decreasing response to treatments, decreasing reversibility
 Choice of no further disease modifying treatment
 General physical decline
 Declining functional performance status (e.g. Palliative Performance Scale4(PPS) ≤60, reduced
ambulation, increasing dependence in most activities of daily living)  Co-morbidity is regarded as the biggest predictive indicator of mortality and morbidity  Weight loss - >10% in past six months  Repeated unplanned/crisis hospital admissions  Sentinel event, e.g. serious fall, bereavement, retirement on medical grounds  Serum albumin <25g/l Specific Clinical Indicators
Flexible criteria with some overlaps, especially with those with frailty or other co-morbidities
a. Cancer - rapid or predicable decline
 Metastatic cancer  More exact predictors for cancer patients are available e.g. PPS, ECOG, PPI, PaP  The single most important predictive factor in cancer is performance status and functional ability - if patients are spending more than 50% of their time in bed/lying down, prognosis is estimated to be about 3 months or less b. Organ failure - erratic decline
Lung Disease

 Disease assessed to be very severe (e.g. FEV1 <30% predicted5)  Recurrent hospital admissions (≥ 3 in last 12 months due to COPD)  Fulfills long term oxygen therapy criteria  MRC grade 4 to 5 – dyspnea after 100m on the level or confined to house  Signs and symptoms of right heart failure  More than 6 weeks of systemic steroids for COPD in preceding 6 months Heart Disease  CHF NYHA Stage 3 or 4 - shortness of breath at rest on minimal exertion
(CHF)
 Repeated hospital admissions with heart failure symptoms  Difficult physical or psychological symptoms despite optimal tolerated therapy 1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre In End of Life Care CIC, 2011. Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Guidance for clinicians to support earlier identification of patients nearing the end of life and who
could benefit from a hospice palliative care approach

Renal Disease  Stage 4 or 5 Chronic Kidney Disease (CKD) whose condition is deteriorating
(CKD)
 Patients choosing the ‘no dialysis' option or discontinuing dialysis (by choice or due to increasing frailty, co-morbidities)  Patients with difficult physical symptoms or psychological symptoms despite optimal tolerated renal replacement therapy  Symptomatic Renal Failure – nausea and vomiting, anorexia, pruritus, reduced functional status, intractable fluid overload Liver Disease
 Advanced cirrhosis with one or more complications in past year: - diuretic resistant ascites, hepatic encephalopathy, hepatorenal syndrome, recurrent variceal bleeds6  Liver transplant contraindicated6
 Child-Pugh Class C
Neurological
Diseases
 Progressive deterioration in physical and/or cognitive function despite optimal  Symptoms which are complex and too difficult to control  Swallowing problems (dysphagia) leading to recurrent aspiration pneumonia, sepsis, breathlessness or respiratory failure  Speech problems: increasing difficulty in communications and progressive Motor Neuron
 Marked rapid decline in physical status
 First episode of aspirational pneumonia
 Increased cognitive difficulties
 Weight Loss
 Significant complex symptoms and medical complications
 Low vital capacity (below 70% of predicted using standard spirometry)
 Dyskinesia, mobility problems and falls
 Communication difficulties
Parkinson's
 Drug treatment less effective or increasingly complex regime of drug treatments
 Reduced independence, needs ADL help
 The condition is less well controlled with increasing "off" periods
 Dyskinesias, mobility problems and falls
 Psychiatric signs (depression, anxiety, hallucinations, psychosis)
 Similar pattern to frailty- see below
Multiple Sclerosis
 Significant complex symptoms and medical complications
 Dysphagia + poor nutritional status
 Communication difficulties e.g. Dysarthria + fatigue
 Cognitive impairment notably the onset of dementia
1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre In End of Life Care CIC, 2011. Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Guidance for clinicians to support earlier identification of patients nearing the end of life and who
could benefit from a hospice palliative care approach

c. Frailty/Dementia - gradual decline
 Multiple co-morbidities with significant impairment in day to day living and:  Deteriorating functional performance status  Combination of at least three of the following symptoms: weakness, slow walking speed, significant weight loss, exhaustion, low physical activity, depression Dementia
 Unable to walk without assistance and  Urinary and fecal incontinence, and  No consistently meaningful verbal communication and  Unable to do self- care without assistance  Reduced ability to perform activities of daily living
Plus any of the following:
 Weight loss, urinary tract Infection, severe pressures sores ( stage 3 or 4),
recurrent fever, reduced oral intake, aspiration pneumonia  Persistent vegetative or minimal conscious state or dense paralysis  Medical complications  Lack of improvement within 3 months of onset  Cognitive impairment / post-stroke dementia References:
1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre in End of Life Care CIC, 2011. 2. Lunney JR, Lynn J, Foley DS, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA 2003; 289:2387-92.
3. Ferris, F. et al. Model to Guide Hospice Palliative Care. Canadian Hospice Palliative Care Association, 4. Palliative Performance Scale (PPSv2) version 2. Medical Care of the Dying, 4th ed.; p. 121. Victoria Hospice Society, 2006. 5. O'Donnell DE et al. Canadian Thoracic Society recommendations for the management of chronic obstructive pulmonary disease – 2007 update. Canadian Respiratory Journal, 2007:14 (Suppl B). 6. Supportive and Palliative Care Indicators tool (SPICT). NHS Lothian and The University of Edinburgh Primary Palliative Care Research Group, 2013. 1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre In End of Life Care CIC, 2011. Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Guidance for clinicians to support earlier identification of patients nearing the end of life and who
could benefit from a hospice palliative care approach
Additional Information:

Mississauga Halton Hospice Palliative Care website provides patients facing life limiting illnesses, their
families, health care providers and physicians with current clinical information, resources and educational
opportunities in palliative care.

Palliative Performance Scale (PPSv2)
The Victoria Hospice Palliative Performance Scale (PPS, version 2) is an 11-point scale designed to measure
patients' performance status in 10% decrements from 100% (healthy) to 0% (death) based on five observable
parameters: ambulation, ability to do activities, self-care, food/fluid intake, and consciousness level.
Instructions on how to use the PPSv2 can be found at: 1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre In End of Life Care CIC, 2011. Mississauga Halton Regional Hospice Palliative Care
Early Identification & Prognostic Indicator Guide
Guidance for clinicians to support earlier identification of patients nearing the end of life and who
could benefit from a hospice palliative care approach
MRC Grade 4-5

Medical Research Council dyspnea scale for grading the degree of a patient's breathlessness:
1. Not troubled by breathlessness except on strenuous exercise 2. Short of breath when hurrying or walking up a slight hill 3. Walks slower than contemporaries on the level because of breathlessness, or has to stop for breath when walking at own pace 4. Stops for breath after about 100 m or after a few minutes on the level
5. Too breathless to leave the house, or breathless when dressing or undressing


CHF NYHA Stage 3 or 4
Congestive heart failure New York Heart Association Classification:
 Class 1 – No limitation in physical activity. Ordinary physical activity produces no symptoms.  Class 2 – Slight limitation in physical activity. No symptoms at rest. Symptoms possible with ordinary physical activity.  Class 3 – More severe limitations in physical activity. Usually comfortable at rest. Symptoms with
unusual physical activity.
Class 4 – Inability to carry on any physical activity without producing symptoms. Symptoms
possible at rest
Chronic Kidney Disease Stage 4 or 5
Child-Pugh Class C: 10 to 15 points; one year survival 45%; two year survival 35%
To calculate score: 1. Thomas.K et al. Prognostic Indicator Guidance, 4th Edition. The Gold Standards Framework Centre In End of Life Care CIC, 2011. PALLIATIVE PERFORMANCE SCALE (PPS)
Ambulation
Activity and
Self-Care
Conscious Level
Evidence of Disease
No Evidence of Disease Some Evidence of Disease Normal Activity with Effort Some Evidence of Disease Unable Normal Job / Work Some Evidence of Disease Unable Hobby / House Work Occasional Assistance Significant Disease Unable to Do Any Work Considerable Assistance Extensive Disease Mainly Assistance Anderson, Fern et al. (1996) Palliative Performance Scale (PPS) a new tool. Journal of Palliative Care 12(1), 5-11 The Last Hours or Days of Life
The information in this package is intended to help you manage the care of your loved one during the last hours or days of living. Care at the end of life takes into consideration both the needs of your loved one as well as your own. Physical Changes and Needs
Weakness and Sleepiness
Your loved one may feel increasingly weak and tired. Often these changes happen over a few days but occasionally this happens quickly over a few hours. Your loved one may be spending the majority or all of their time in bed. A hospital bed may be required to make it easier to care for the individual at home. Your Health Care Provider ( ie. CCAC, Nurse, PCNC, Nurse Practitioner or Doctor) may order this for your loved one. Usually a person has a certain position in which they feel most comfortable. The position only needs to be changed every few hours, unless the nurse instructs you otherwise. The nurse will help teach you how to reposition your loved one. As weakness progresses, getting up to the bathroom can be a challenge. To make this time a little easier, the nurse may suggest a urine catheter or incontinence briefs, so that the person does not have to leave the bed to go to the toilet. A urinary catheter does not usually cause pain and can be helpful to support the individual's comfort and help to preserve dignity. Your loved one may appear to be in a light sleep all of the time and at times, can be more awake at night. In a very few cases the patient may be in a coma. Coma should not be feared; it is just a deep sleep and does not cause any pain or distress to your loved one. You do not need to be quiet when around your loved one. Speak in normal voices. Try to avoid very loud noises that may startle and disturb the individual. It is important to always talk to your loved one as if she or he can hear everything. The person may be too weak to respond or not able to speak but may still be able to hear and understand what you say. Communicating your feelings through talking, hugging, touching and crying is important. Playing their favorite music is sometimes a comfort. It may be appropriate to lie beside your loved one. Saying goodbye and even giving permission for your loved one to pass may be important. Eating and Drinking
At this stage your loved one will eat or drink very little, if at all. At this time food and water will not help provide your loved one comfort and it will not keep them alive longer. If you try to feed someone who is very sleepy, the food or water may enter the lungs and cause the person to choke or cough. If the person asks for a drink, raise the head of the bed and give him/ her small amounts of fluid. If you hear the person cough or have difficulty breathing while giving them fluids, stop immediately. Adapted from the Temmy Latner Centre for Palliative Care 1999 The Last Hours or Days of Life Some families ask for fluid replacement (through a needle in a vein or subcutaneous tissue), when they notice decreased intake. The solutions used are usually just sugar and water and or salt and water and do not provide your loved one with nutrition. The artificial hydration does not necessarily provide comfort and may actually have the opposite effect. We do not usually recommend using an IV unless there is special medication that needs to be given that way. Restlessness and Agitation
Sometimes your loved one can become very agitated or restless. This is because of the internal changes occurring in your loved one's body, or sometimes from medication side effects. The doctor may prescribe a medication that can be absorbed under the tongue, inside of the person's cheek or by subcutaneous injection. This medication is mildly sedating and should help calm and soothe a restless person. The medication may need to be administered frequently initially and it may require several doses before the restlessness stops. Your doctor, nurse practitioner or nurse can teach you how to give the medication. This medication will not harm your loved one, just help to calm them. Changes in Breathing Pattern
You may notice irregular, shallow breathing, or even brief periods when breathing may stop (apnea). These are signs that the body is slowing down. Sometimes, oxygen is used to provide symptom relief to an individual at the end of life if their blood oxygen level is low. This is not routinely required; it may be of no benefit to your loved one. The care team will provide direction for you and your loved one. Opioids (ie morphine or dilaudid) might already be prescribed for pain, opioids can also help to relieve the feeling of breathlessness. Gurgling in the Throat and Secretions
Near the time of death (hours to days), you may hear the person gurgle or make snoring like noises. During this time your loved one will be extremely drowsy and may not respond at all. These changes suggest that the process of swallowing is weakening. The noises can be caused by small amounts of mucous in the throat or the tongue moving back due to the relaxation of the jaw muscles. Sometimes a soft short moaning sound will occur with each breath out. Again, be reassured that your loved one is not in pain and is in no distress. The best position for your loved one is laying on their back with their head slightly elevated, however if the person appears to be uncomfortable, side lying can also improve the gurgling sound in the throat. Make sure the person is supported by pillows. The doctor, nurse practitioner or nurse may recommend trying a medication that will help to dry these secretions up. Oxygen is not helpful in this situation and suctioning the patient almost always causes them a lot of distress and is not recommended. Mouth and Eye Care
It is important that you help your loved one at this time with mouth care. Often you may find the person is breathing through their mouth and taking in very little fluid. The lining of the mouth and tongue can become quite dry, causing the person some discomfort. Frequent mouth care will help to alleviate this problem. If you are caring for your loved one at home you can make a solution to assist you in your mouth care. The homemade solution consists of 4 cups water, ½ teaspoon of salt and 1 teaspoon of baking soda. Make a new solution each day. Use this solution and the sponge tip swabs to clean and freshen the lining of the mouth, tongue and gums. Occasionally your loved one may bite down on the swab; this is a normal reaction to protect the mouth. If this happens, continue to hold Adapted from the Temmy Latner Centre for Palliative Care 1999 The Last Hours or Days of Life the stick and in a few moments the person will not bite anymore. As well, apply something soothing on the person's lips such as lip balm (petroleum based lip cream is not recommended when oxygen is in use). Mouth care should be hourly to promote comfort and your nurse will show you how to do this. For relieving dry eyes, you may wish to purchase some artificial tears from the pharmacy and instill them into your loved one's eyes about 4 times a day. Your nurse will teach you how to do this too. Pain does not usually get worse at end of life. As the person becomes sleepier and moves around less, there is often less pain. Your doctor or nurse practitioner may need to adjust medications to accommodate these changes. If your loved one can no longer swallow, the doctor or nurse practitioner may change the way or route that the mediations are given. Your care team ( Nurse, PCNC, NP, MD) will develop an individualized symptom management plan of care that best suits the needs of your loved one. Sometimes you may hear your loved one moaning. This may happen when you reposition the person from side to side, or when they breathe out. This moaning is often not caused by pain. If you see the person's forehead scrunch up or frowning, this could mean they are in pain. In this case you should give a breakthrough dose of the pain medication as instructed by your health care team and observe for improvement of the pain behaviour. Very Near the Time of Death
As your loved one comes close to the time of dying, you may notice blotchiness and coolness of the arms and legs. The person's eyes will often be open and not blinking. At this time do not worry about the nurse taking your loved ones blood pressure or pulse; they are not reliable signs of impending death. This may be a time when you talk and express your feelings or just sit quietly and be present with your loved one as they make their journey. Occasionally, someone who is unresponsive may suddenly become more alert as impending death approaches. Do not be afraid, this is normal and is not a time of distress. When Your Loved One Dies
Do Not Panic; Do Not Call 911
There is no need to contact any authority immediately, even the physician. Express your grief and take your time. People experience a wide array of emotions such as relief, sadness, guilt, peace. All are normal reactions. When you are ready, call the health care professional as per the EDITH protocol. If the death occurs in the middle of the night, call the health care professional first thing in the morning and she or he will come as soon as possible. In any case it may take some time to respond. This should not worry you. The doctor, nurse practitioner or nurse will fill out a special certificate and then the funeral home can be called. Adapted from the Temmy Latner Centre for Palliative Care 1999 The Last Hours or Days of Life
In Closing
We value the care and concern that you have shown your loved one in managing this difficult situation. Community provision of palliative care would not be possible without the dedication and support from people like you. If you have any concerns at any time please do not hesitate to contact your health care professional. Finally, if you feel you need some help coping with your grief, please contact us and we will connect you with a grief counseling service. Adapted from the Temmy Latner Centre for Palliative Care 1999

Source: http://nsmhpcn.ca/wp-content/uploads/2014/07/EXPERT-PANEL-Preparing-for-Death-in-the-Home-plus-handouts.pdf

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IEEE TRANSACTIONS ON INFORMATION THEORY, VOL. 56, NO. 9, SEPTEMBER 2010 Thinning, Entropy, and the Law of Thin Numbers Peter Harremoës, Member, IEEE, Oliver Johnson, and Ioannis Kontoyiannis, Senior Member, IEEE Abstract—Rényi's thinning operation on a discrete random vari- where the random variables are independent and identi-