1. Providing Palliative Care in the Aged Care Sector Professor Colleen Cartwright Principal Director Cartwright Consulting Australia Pty ltd cartwrightconsultingaust@gmail.com

2. Palliative Care: ANZSPM Definitions A Palliative Approach to Care: Palliative Care (also) applies to non-specialist care and is defined by WHO (2013)i as: “…an approach to care that improves the quality of life of patients … and their families who are facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual. Palliative care also respects the choice of patients and helps their families to deal with practical issues, including coping with loss and grief throughout the illness and in case of bereavement.”

3. Palliative Care: ANZSPM - 2 Specialist Palliative Care is defined by Palliative Care Australia (2008) as: “…services provided by an interdisciplinary team of specialist palliative care professionals whose substantive work is with patients who have an eventually fatal condition. Specialist palliative care services are provided in various care settings including community, home, hospitals, aged care homes and hospices and palliative care units.”

4. Palliative Care: ANZSPM - 3 More specifically, specialist palliative care is defined by Quill & Abernethey (NEJM 2013) as: Management of refractory pain or other symptoms Management of more complex depression, anxiety, grief and existential distress Assistance with conflict resolution regarding goals or methods of treatment: within families, between staff and families, among treatment teams Assistance in addressing cases of inappropriate care that some may define as ‘near futility’* (*Note: - In some cases such treatment amounts to abuse)

5. Palliative Care - The OLD (Thanks to Dr Barbara Hayes, Northern Health, Victoria)

6. Palliative Care: The NEW

7. Fears and Concerns in the General Community Cases Reported –Loved one “left hooked up to machines until the very end. We couldn’t even get close enough to give him a hug and say goodbye”. –(Daughter). “She said that the medical staff were running through her room ‘like a gravy train’. She didn’t know most of the time what they were there for or what they were doing… they usually just said something like ‘Now we’re just taking you down to test you for (whatever)’… They never asked her permission”.

8. Carers’ Stories -2 “Mum always said she wouldn’t want to be resuscitated if her heart stopped, but they wouldn’t listen”. (Wife) “First of all he was stubborn when he was in hospital; he wouldn’t eat - he was just starving himself. They couldn’t get him to eat … so they had to force-feed him. They put a tube down his nose and then they had to tie him in the bed, because he kept pulling it out. He just didn’t want it”.

9. Confusion About what is/is not Euthanasia Many problems stem from confusion over what is, or is not, euthanasia. This leads to: –Inadequate pain management –Inappropriate use of medical technology –Fear among health professionals of legal consequences of care provision –Poor doctor-patient communication –Disillusioned patients/families/carers

10. Common Beliefs Some commonly held beliefs are that euthanasia includes: (a)giving increasing amounts of needed pain relief which may also have the effect of shortening the person's life; or (b)respecting a patient's right to refuse further treatment; or (c)withholding or withdrawing life support systems that have ceased to be effective or that will provide no real benefit to the patient None of these is euthanasia

11. Definitions of Euthanasia The World Medical Association defines euthanasia as "the deliberate ending of a person's life at his or her request, using drugs to accelerate death”. Definition used in studies in Qld, NSW, NT & Europe: –Euthanasia is a deliberate act intended to cause the death of the patient, at that patient’s request, for what he or she sees as being in his/her best interests (i.e. Active Voluntary Euthanasia – AVE).

12. Giving Pain Relief Which May Also Shorten the Patient's Life Often referred to as "the doctrine of double effect“ - primary intention is to relieve pain, secondary, unintentional effect may be the hastening of the person's death. Accepted by most religious and medical groups, including those who strongly oppose euthanasia. Not giving adequate pain treatment when needed may shorten life: patient may suffer complications such as life-threatening cramps or severe respiratory problems if severe pain is left untreated

13. Respecting a Patient's Right to Refuse Treatment This is a legal and moral right possessed by every competent person, under both common law and, in some States/ Territories, under statute law relating to assault; also by non-competent patient by Advance Care Direction or through an Enduring Guardian. Difficult area for some health professionals to accept, especially such things as a person refusing a blood transfusion because of religious beliefs.

14. Withholding/Withdrawing Futile Life- Supports Systems Used to be called "passive euthanasia”; general agreement that that term is unhelpful - it can lead to the inappropriate continued use of invasive technology. Often it is not prolonging life, it is merely prolonging the dying process. Removal of futile treatment is good medical practice. However, no definition of futility in law; generally agreed, when burden outweighs benefits – but “burden” and “benefit” should be from patient’s viewpoint.

15. Community Concerns in Terminal Illness: Rank Order FACTORSQ1Q2NT Loss of Mental Faculties111 Loss of Control222 Loss of Independence*33 Burden on Family*44 Loss of Dignity455 Leaving Loved Ones5*6 Protracted Dying**7 Extreme /Physical Pain368 Death Itself9910/10

16. Advance Care Planning helps Address Fears & Concerns In Australia: –all states/territories have specific legislation to allow a competent person to appoint their own substitute decision-maker(s) (usually called Enduring Guardian or Medical Agent) –most states/territories have specific legislation for use of written Advance Care Directives (ACD); others rely on the common law. All legally binding

17. What if there is no ACD or EG equiv.? In the legislation of most states/territories there is a specified “order of authority” for who can make health care decisions. In NSW, this is called ‘Person Responsible’ and is the first, readily available, of: –A spouse (including de facto or same sex spouse). –A (non-professional) carer*. –A close relative or friend, of the patient. (Note: Not Next-of-Kin and may not be the person the patient would have chosen to make their decisions). * For a person in a RACF, “carer” is not a staff member at the facility. Usually it would be whoever was the carer before the person went to the facility.

18. Scenario 1 (abbreviated) Jenny: 55 years old; diagnosed with MND 6/12 ago. Taken unconscious to hospital after a car accident; now stable. Decisions needed about her medical treatment. Husband Peter listed as next-of-kin on previous hospital records but they have been separated for many years and do not see each other often. Peter and Jenny have two adult children, Sarah & Michael. Michael is Jenny’s attorney for financial matters under EPoA. Sarah has recently taken 3 months leave to care for her mother full-time. For the last 5 years, Jenny has lived with her same-sex partner, Susan. Respondents were asked: If all present at Jenny’s bedside, who would be legally entitled to consent to her medical treatment?

19. Scenario 1 - Results When responses were collapsed to Partner/Other for whole group, ICS (47%), PCS (45%) & Geriat (43%) were sml than other specialists to correctly answer ‘Partner’ cf 29% overall. Renal (13%) & Resp (17%) were sll than other specialists to give the correct answer. STATEHusbandSonDaughterPartnerDon’t Know Correct Qld18%15%12%31%24%Partner NSW8%52%*8%22%10%Partner Vic21%7%13%36%23%Partner

20. Palliative Care Provision in Residential Care: What are the Challenges? Lack of RNs to give medication such as morphine & to carry out medical orders of the palliative care physician (including if pain relief is ordered prn, using clinical judgement to know when it is needed); (Not AIN/PC) 1 RN for 60 residents: may have to transfer to hospital!! Need for discussion with patient/family* by RN or P/C physician who know them, ahead of emergency; should not be done by agency nurse in the middle of the night! Residents need support/assistance to complete Advance Care Directives when they are in a stable condition. Medical orders need to be drawn up in advance to translate ACDs for compliance by RNs, Locum GPs

21. Palliative Care Provision in Residential Care: What are the Challenges? - 2 Have plans in place to deal with pain relief, nausea, shortness of breath, delirium/agitation; Order medications in advance to deal with above – don’t wait until you need them; they may not be readily available in your community pharmacies. (Same for community care) For all above: staff training is required, including: –What palliative care is: not just pain & symptom control – includes physical, psychosocial, spiritual & bereavement care; –What is/is not euthanasia: adequate pain relief, even if it hastens death, is not; –Artificial Nutrition/Hydration – can increase suffering & deprive resident of peaceful death; –How to ask the right questions at the right time

22. Palliative Care Provision in Community Care Can be less restrictive than in RACF: family members can be taught to administer pain medication (e.g., RN can put in “butterfly” & leave loaded syringes of medication in the ‘fridge, so carer does not need to draw them up) But: providing palliative care at home depends on having good family support – for 23/24 hrs/day the RN will not be there – need instructions, “what to do if…” Need to provide right equipment for patient’s condition; Service providers need to know how to access specialist palliative care services in your area if staff are providing a palliative approach to care. Essential that family carer has access to a palliative care professional to provide advice by phone, even at 3am! Also, some patients do not have family to care for them

23. Palliative Care Provision in Community Care - 2 Medical treatment orders need to be developed, in clear simple terms that carer can follow, so e.g., they don’t panic and call the ambulance – need instructions to call the palliative care team; MTOs also need to authorise nurse to legally give medication, with doses specified & possibly frequency & route of administration Letter from palliative care specialist or team in case ambulance is required, which states (e.g.,) “No CPR, intubation of other life-sustaining treatment – For comfort care only”; letter could also state that patient is in the condition specified in the ACD, so that should be followed

24. Consumer-Directed Care In acute care, residential care or community care, a major component from now on will be CDC. This means listening to the patient/resident/client (if they have capacity) or if they do not, to those closest to them or their wishes expressed in an Advance Care Directive, and respecting their individual and unique decisions about their care and treatment (within legal limits). This will require a better understanding of capacity. Being older does not automatically mean not having capacity (>80, 12% have dementia – so 88% do not; <80, 18% have dementia – 82% do not; <90, 34% have dementia – 20 66% do not)!

25. When Does a Person Have Capacity to Make A Decision (inc. write an AHD or appoint an Attorney)? Person is presumed to have capacity unless proven otherwise (a diagnosis of dementia does not immediately mean the person has lost capacity). BEWARE THE MMSE! Person must understand the nature and the effect of the decision to be made – (case study) & complete and sign the document without any coercion, pressure or influence by others. Person must be able to communicate their decision in some way - not necessarily by speaking or writing - body language may be adequate, e.g. nodding/ shaking head (case study).

26. Incapacity is Not: Ignorance Eccentricity, cultural diversity or having different ethical views Communication failure Having a diagnosis of dementia; depends on level –Mild (usually would still have capacity) –Moderate (may have fluctuating capacity) –Severe (usually would not have capacity but may still indicate when they don’t want something – like a PEG tube!) Bad decisions Disagreeing with doctor or nurse

27. Healthy Ageing: Healthy Dying An ageing world population brings many challenges – including the imperative to protect our most vulnerable older people When older people not only live well but also die well, we can claim success! Thank You