Discussions at the End of Life

1. Discussions at the End of Life Yvonne D’Arcy, MS, CRNP,CNSPain Management & Palliative Care Nurse Practitioner Suburban Hospital-Johns Hopkins Medicine Bethesda MD 20814

2. Objectives • Describe the death and dying process and rationale for palliative care • Select appropriate referral sources and community resources for patients and caregivers • Identify assessment tools and communication skills for EOL nursing care • Describe legal and ethical challenges that may occur at the end of life • Identify EOL pain and palliative care interventions

3. Who are we treating at the end of life? • The patient’s needs must be met and his/her wishes determined and addressed- considered to be the gold standard of patient care at EOL • Goals of care need to be established-by far the most common goal chosen by patients and families at this time is comfort • Changes in the American family structure mean that the family members may never have seen anyone die and do not know what to expect

4. Types of Discussions • Family and relationship related discussions • Treatment related discussions; code status, tube feedings, goals

5. The four things that matter most • Please forgive me • I forgive you • Thank you • I love you • Relationships are the most valuable thing to patients who are dying The Four Things That Matter Most by Ira Byock

6. The Discussion about Death • The healthcare provider may be the person who is asked questions about the dying process • Questions such as what will happen, how it look, will the patient know they are dying, and will it be painful are all questions that nurses may be asked • Providers will need to develop skills and techniques for answering these questions

7. Preparing for the Conversation • Become comfortable with end of life issues • Understand the experience from the family’s perspective, consider the relationships that exist • Understand the full range of options of choices you can offer patients and families about their care • Develop a “can do” approach to your end of life care • Learn to share and receive information in a compassionate manner (Arnold & Egan,2004)

8. Barriers to conversations about death and dying • End of life conversations are sensitive-they force us to contemplate a future without our loved one • End of life conversations may trigger unwelcome feelings of personal death awareness

9. Barriers • Many people feel guilty about initiating or participating in end of life conversations about the loved one • Family members who are designated as decision makers do not want to play God • We all feel we have lots of time before we need to discuss death and dying (JPM,2012)

10. Ideas about this discussion • Use a booklet such as “Hard Choices for Loving People by Hank Dunn “ or any other publication that can open up the conversation • Be prepared to give the family concrete ideas- how to contact hospice, where support groups are located • Ask families for specific things they fear-such as air hunger or pain • Address denial in a non-judgmental and caring manner • Be culturally sensitive-some cultures request that the patient not be told about the prognosis leading to an ethical dilemma

11. Types of discussions • Instead of “You can beat this” try “It must be hard to come to terms with all of this” • Instead of “I can’t see how anyone can help” try “ We will be there for you always” • Instead of “I just can’t talk about this” try” I see you are feeling a little overwhelmed right now. We can take this up later” • Healthcare providers can guide discussions that help families speak about important issues ( Lynn & Harold,1999)

12. Introduce the idea of palliative care and hospice care • Palliative care can be used early in the disease process when curative care is still being used • Hospice is for patients who have elected to forego curative care and are concentrating on the comfort goal- usually within the last 3 to 6 months of life • Patients in hospice elect to allow death to occur naturally with no aggressive measures

13. Once death is imminent- Final planning • Families often have questions about terminal care • What funeral homes are available, questions about cremation versus burial, or religious needs such as having a sitter stay with the body • Having a list of funeral homes and what services they offer can give the family an idea of where to look for answers to their questions

14. Why does communication not take place? • In a study with 174 nurses working with terminal patients in hospitals obstacles identified were: • Unwillingness of the patient or family to accept prognosis or hospice referral • Sudden death/patient unable to communicate • Provider discomfort • Provider’s desire to maintain hope (Shulman-Green et al, 2005)

15. Using functionality as a way to determine prognosis • The Eastern Collaborative Oncology Group (ECOG) Scale can be used to determine the patient's functional status • Rankings range from 0- Fully active, able to function at pre disease level 1- Ambulatory restricted physically 2- Ambulatory up and about 50% of waking hours 3- Limited self care confined to bed 50% or more of waking hours 4- Completely disabled confined to bed or chair 5- Dead

16. Karnofsky Performance Scale • Karnofsky Performance Status Score • The Karnofsky score, used as an indicator for hospice appropriateness, measures patient performance in activities of daily living Score Function 100 Normal, no evidence of disease 90 Able to perform normal activity with only minor symptoms 80 Normal activity with effort, some symptoms 70 Able to care for self but unable to do normal activities 60 Requires occasional assistance, cares for most needs 50 Requires considerable assistance 40 Disabled, requires special assistance 30 Severely disabled 20 Very sick, requires active supportive treatment 10 Moribund

17. Palliative Performance Scale • Uses elements of ambulation, activity & evidence of disease, self-care, intake, and conscious level as criteria • Scores are obtained by reading horizontally to get the best fit for the patient's condition • Scoring ranges from 100% full activity down to 0% death

18. Palliative Prognostic Score (PaP) • The Palliative Prognostic Score (PaP) • CRITERION ASSESSMENT PARTIAL SCORE • Dyspnea No 0 Yes 1 • Anorexia No 0 Yes 1.5 • Kamofsky Performance Status >30 0, 10 – 20 2.5 • Clinical Prediction of Survival (weeks)>12 0, 11-12 2, 7-10 2.5, 5-6 4.5 3-4 6, 1-2 8.5 • Total WBC (x109/L<8.5 0, 8.6 – 11 0.5, >11 1.5 • Lymphocyte Percentage20 - 40% 0, 12 - 19.9% 1, < 12% 2.5 • RISK GROUP 30 DAY SURVIVAL Total score A >70% 0-5.5 B 30 - 70% 5.6-11 C < 30% 11.1-17.5

19. Legalities and Ethical Considerations • Some questions about end of life care center around advance directives • Who is really the POA if the patient is unable to respond? • What happens if the family reverses the advance directives? • These questions should focus of who the patient is and what he or she would have wanted if they were able to tell us

20. Code Status Decisions • Often not really a decision because the disease or condition will progress despite the decision about CPR • About 15 % of patients who receive CPR survive to be discharged • Burdens of successful CPR include fractured ribs, punctured lungs, brain damage, being connected to machines and unable to survive off of them • Using the term allow death to occur naturally may be a better way to help families make the CPR decision

21. Euthanasia • Euthanasia is illegal in most states and considered as an unethical practice • Patients and families will ask healthcare providers to stop the suffering, physician assisted suicide, and “make it end” • Patients and families should be reassured that we cannot end the patient's life but we will do everything possible to control symptoms and provide support

22. Tube Feedings When a patient can no longer swallow or eat the patient and family must decide how to proceed Many families find this a very difficult decision to make They perceive the patient as hungry and starving

23. Family Education about Tube Feeding for the Demented Patient • At the End of Life tube feedings for demented patient TF present a risk for aspiration pneumonia • Survival is not prolonged • TF do not prevent nor heal pressure ulcers • Functional status is not improved with TF • Restraints may be necessary to maintain the tube

24. Symptom Management at End of Life • Pain, Nausea/Vomiting/Secretion control, Shortness of breath, Delirium and Agitation are all symptoms that can be burdensome at the end of life • Some symptoms may become refractory at the end of life and require multimodal approaches or invasive techniques to manage

25. Pain and the Comfort Goal • Since time is limited for EOL patients when pain occurs it merits aggressive treatment • For patients on oral medication dose escalation with or without the use of intravenous opioids may be needed • Patients should be assessed for the need for extended release opioids such as MS Contin, Avinza, Kadian, Oxycontin, Fentanyl patches, Exaglo

26. Opioid Use • There is no opioid ceiling for EOL patients however they may become quickly tolerant • As organs shut down opioids will stay in circulation for longer periods of time so lower doses may be enough to control pain for some patients • Other patients have pain that requires aggressive titration

27. Opioid Effects • When patients become tolerant to their current opioid , opioid rotation may be needed to increase analgesia • To use opioid rotation do and equianalgesic conversion from the current opioid to the equivalent does of the new opioid and reduce the dose by 25% to 50%

28. Opioid Hyperalgesia • Patients with opioid hyperalgesia complain of ‘pain all over” • The slightest touch may stimulate a very significant pain response • Condition occurs with patients who have been taking high dose opioids for long periods of time with dose escalations creating a heightened sensitivity to the pain with less analgesia despite increased doses • The treatment is to reduce the dose of opioids since the opioid is creating the problem

29. Common doses of opioids • Morphine is the gold standard for pain relief but other medications such as hydromorphone and fentanyl can be used • Drips can be started either as intravenous or subcutaneous infusion • Patients should be bolused first to achieve comfort, then starting continuous infusions at morphine 1 mg/hr or hydromorphone 0.2mg/hr titrating to comfort • Additional clinician boluses should be made available for increased pain or dyspnea

30. Other options for pain management • Home PCAs can be used as well as tunneled epidural catheters • Celiac plexus blocks can reduce pain to a minimum for pancreatic cancer patients • For intractable pain infusions of local anesthetic such as lidocaine bolused at 1-3 mg/kg IV over 20-30 minutes with a continuous infusion of 1-3 mg/kg/hr • Ketamine drips starting at 0.04/mg/kg/hr with a maximum dose of 0.3mg/kg/hr can increase pain relief and also have an opioid sparing effect-Decrease opioid doses by 25% when starting ketamine (Paice,2010)

31. Nausea/ Vomiting/ Secretion control • If nausea and vomiting are present use of anti-emetics around the clock may be needed or a medication such as Kytril may be used or Zofran ODTs • Scopolamine patches and Robinul IV can be used to dry up secretions that are not being cleared by the patient • This eliminates what families sometimes call the “death rattle”

32. Delirium/Agitation • Dementia and delirium are two different conditions although a demented patient may also become delirious • Dementia is a progressive disease with declining cognition while delirium has an acute onset • The medication that is most commonly used to treat delirium and agitation is haloperidol, lorazepam is sedating • For the EOL patient benzodiazepines and sedating neuroleptics are also indicated for symptom control ( Bookbinder & McHugh, 2010)

33. Dyspnea • Dyspnea is a common symptom for patients with CHF, lung cancer, COPD, ovarian cancer • The air hunger produces anxiety when in turn increases the dyspnea • Supplemental oxygen can provides some relief but anxiolitics such as lorazepam or diazepam can also be used • Opioids such as morphine are commonly used to treat dyspnea and they can be intravenously or as a continuous drip • The principle of double effect supports the use of opioids even though it may create hypoventilation and hypercarbia

34. Constipation for patients at end of life • Opioid induced constipation is a real concern for end of life patients who are on high dose opioids • Assessing the patient regularly for constipation is needed • Use of laxatives and stool softeners will need to be scheduled rather than prn

35. Constipation at EOL • Constipation can be painful and create agitation at the end of life • Most EOL patients cannot take in enough fluid to use a bulk forming laxative so other types should be tried until one is found to be effective • Methylnaltrexone subcutaneous 0.15mg/kg can provide laxation in 4 hours for opioid induced constipation • Sorbee brand candies contain sorbitol which is laxative and will produce a laxative effect

36. Palliative Sedation at EOL • Used as a last resort for treating intractable symptoms such as pain, nausea, or dyspnea • It is highly effective 71% to 92% of the time • Medications are given intravenously as drips usually, midazolam, barbituates, alone or in combination • Propofol can used in the rare case

37. Considerations with Palliative Sedation • Opioids are usually a part of eth regimen and are used for analgesic effect • It is not the same as physician assisted suicide or euthanasia-PS relieves suffering while the other two intentionally end life • PS has the support of eth Supreme Court for relieving suffering even if life is shortened ( Olsen, Swantz, Mueller,2010)

38. The End of Life • Nurses are the healthcare provider who is most often with the patient and family when death occurs • Being present and offering support are invaluable gifts to give • Healthcare providers who care for patients at the end of life need to have their own support system and learn to restore themselves regularly to continue this important work