LIVING SUCCESSFULLY WITH ADVANCED CANCER MOVING BEYOND CANCER TO WELLNESS JUNE 6, 2015 PAMELA STITZLEIN DAVIES, MS, ARNP, ACHPN SUPPORTIVE & PALLIATIVE CARE SEATTLE CANCER CARE ALLIANCE / UNIV WASHINGTON SCCA Palliative Care: 206.288.7474
Disclosures Royalties from Springer Publishing: Davies & D Arcy. 2013. Compact Clinical Guide to Cancer Pain Nursing: An Evidence Based Guide for Nurses Honoraria-Speaking: Get-SMART FDA Blueprint for ER/LA opioid prescribing
Objectives Discuss strategies to encourage success when coping with advanced cancer Discuss management of pain and symptoms common in advanced disease Describe advanced care planning that we ALL should do
Overview Strategies for successfully living with advanced disease Pain Management Selected Symptom Management Future Planning
Strategies for Successfully Living with Advanced Disease Try to live one day at a time Hope for the best, but prepare for the worst Learn to adapt to a life filled with uncertainty Utilize active management strategies to deal with anxiety and worry about the future Consider each and every day as a gift
More Thoughts on Successful Living Find a purpose in life Create healthy and nurturing relationships Love yourself Serve others Pursue activities and relationships that bring you joy Focus on what you can do rather than what you cannot do
Pain Management in Advanced Cancer Problems with pain are common in advanced cancer Pain can be managed with a variety of strategies Please tell your oncologist/app/nurse if you have pain Don t assume that they know! APP = Advanced Practice Provider (Nurse Practitioner or Physician Assistant)
Causes of Pain Tumor related Tumor pressure on organs and nerves Treatment related Chemotherapy Surgery Radiation Unrelated to cancer Chronic low back pain Arthritis
Pharmacological Agents for Pain Opioids (narcotics) Non-opioid analgesics Topical agents Adjuvant analgesics
Opioids (Narcotics) The foundation for management of cancer pain Morphine, oxycodone Moderate to severe pain Formulated as: Short-acting Long-acting Side effects: constipation, sleepiness, nausea
But, will I get addicted?
Tolerance Psychological Dependence Physical Dependence
Definitions of Addiction Tolerance Require a higher dose to get the achieve the same analgesic effect Physiological dependence The body gets accustomed to the drug These are NOT addiction!
Psychological Dependence = Addiction The 4 C s Craving the drug Compulsive use Out of Control Continued use despite adverse Consequences (DUI, jail)
Drug Safekeeping In the Home LockYourMeds.org
Non-opioid analgesics Acetaminophen (Tylenol) Avoid if liver problems Maximum dose 2000-4000 mg per day Non-steroidal anti-inflammatory agents (NSAIDs) Naproxen (Aleve) or ibuprofen (Motrin, Advil) Avoid if kidney problems or bleeding ulcers Do not take with: Blood thinners (warfarin, Lovenox shots) Steroids (dexamethasone)
Topical Agents Applied to the skin at the site of pain Lidocaine 5% topical patch For nerve pain Diclofenac gel or patch For arthritis or sprains Capsaicin cream Non prescription Joint pain, nerve pain Chili pepper cream-made from capsicum Wash hands!
Adjuvant analgesics Anticonvulsants Gabapentin (Neurontin) Treats nerve pain (neuropathy) Antidepressants Duloxetine (Cymbalta) Treats nerve pain and depression
Types of Pain Causes of pain can be from: Physical Psychological Social Spiritual
Pain Can Be: Physical Pain from cancer Psychological Broken heart Social Friends disappear after cancer diagnosis Financial problems Spiritual / Existential Why hasn t God healed me? What happens to me after death?
Common Symptoms in Advanced Disease Fatigue Low appetite Bowel problems Constipation or diarrhea Edema and lymphedema Sexual dysfunction Cognitive problems Mood issues Anxiety, depression Sleep problems
Constipation Goal for passing stool: A bowel movement every day, or every other day Soft Formed Easy to pass without straining
Management of Constipation Regular use of a bowel management program Mush Push Gush Stool softener, stimulant, osmotic laxative MiraLax + Senna, or Docusate + Senna Prunes Lots of fluids Regular exercise Avoid fiber supplements in advanced cancer
Mood Depression Very common in advanced illness Low mood, no pleasure in life, irritability, sleep changes (too much or too little), suicidal thoughts Anxiety and panic attacks Treatment can help! Counseling Medications Please speak up and reach out for help Especially if consider that life is not worth living or having suicidal thoughts
Sleep Difficulties Many causes Depression & anxiety Medications (steroids) Pain Fatigue Sleep hygiene techniques are just as effective as medications
Sleep Hygiene Maintain a regular bedtime and wake schedule AVOID NAPS! Use the bedroom only for sleep and intimacy No TV, computer, phone, games in bedroom Sleep in a room that is dark, quiet, comfortable, and cool If you can t get to sleep, get out of bed After 20 minutes, get out of bed, go to another room to read quietly until sleepy, then try again Exercise regularly Establish a comforting bedtime ritual Calm and quiet in the evening, dim the house lights Avoid caffeine within 6 hours & alcohol or smoking within 2 hours Designate a worry time earlier in the day www.wramc.army.mil/patients/healthcare/medicine/pulmonary/resourcessleep_hygeine_instructions.pdf
Get Your Affairs In Order Legal paperwork Relationships Practical concerns
Advanced Directives If you couldn t make your own medical decisions, who would you want to make them for you? Durable Power of Attorney for Health Care (DPOA-HC) Does not have to be the spouse What would you want them to know about your preferences for health care? Health Care Directive (HCD) Advanced Directive Living Will
POLST Form Physician Orders for Life Sustaining Treatment This form is most appropriate in the last 6 months of life If Allow Natural Death is chosen, 911 Medics can legally forego futile resuscitation attempts A physician order when there is no time or ability to discuss the patient s wishes
Physician Orders For Life-Sustaining Treatment (POLST) Allow Natural Death Level of medical interventions if 911 is called Antibiotics Artificially Administered Nutrition Patient and Provider Signature
The Four Things That Matter Most Please forgive me I forgive you Thank you I love you IraByock.org
Developmental Milestones and Tasks as life comes to an end Sense of completion in life and relationships Sense of meaning about one s life Experience the love of self Experience the love of others Surrender to the transcendent, to the unknown letting go Based on Ira Byock. Taken from When Death is Near: A Caregivers Guide
Palliative Care & Hospice Provided at any point in illness, with any prognosis Chemo, surgery OK Extra layer of support Variety of team members in a variety of settings of care Last 6 months of life Chemo no longer helpful Care provided in the home But not 24/7 care Nurse, social worker, bath aid visit a few times a week Strict Medicare criteria
Hospice When to Enroll When chemotherapy / anti-cancer therapies are stopped Too weak to come to clinic Desire to change the focus to comfort and quality of life, and avoid trips to the clinic It is better to enroll in Hospice earlier rather than later Allows time for Hospice team to provide excellent end of life care Enrolling does not hasten death; but, most patients delay enrolling until only days from dying Hospice care is less effective if they have only a few days Patients may actually live LONGER if Hospice care if instituted earlier rather than later Enrolling in hospice is NOT giving up!
End of Life Care "You matter because of who you are. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die." Dame Cicely Saunders Founder of the modern hospice movement
Strategies for Successfully Living with Advanced Disease Try to live one day at a time Hope for the best, but prepare for the worst Learn to adapt to a life filled with uncertainty Utilize active management strategies to deal with anxiety and worry about the future Consider each and every day as a gift
More Thoughts on Successful Living Find a purpose in life Create healthy and nurturing relationships Love yourself Serve others Pursue activities and relationships that bring you joy Focus on what you can do rather than what you cannot do
Conclusion Improvements in cancer therapy allows some patients to live with advanced cancer for many years Treatments are available to help with bothersome symptoms Active planning and preparation for eventual end of life can provide comfort and peace Utilizing Palliative Care services and early enrollment in Hospice care can help