Ethical Issues Surrounding End of Life Care: A Perspective From the Chinese Culture

1. Ethical Issues Surrounding End of Life Care:A Perspective From the Chinese Culture By Ingrid See, RN BSN MED Clinical Practice Leader Vancouver Home Hospice

2. Uniqueness of Culture • Each person has his/her own philosophy about health and illness • Understand the experiences, traditions, and values that shape each individual’s views about health and illness • Important to find out about the individual’s perception of health problems, treatments, and goals

3. Is There An Easy Recipe? • No “cookbook” for any culture

4. Long ago, in a galaxy far, far, away………..

5. The universe was in a state of chaos, without form, force, or substance

6. Negative & Positive Forces

7. Balance & Harmony

8. Universe = Man

9. 5 Elements

10. Yin Yang Theory • Health exists when balance occurs in yin and yang, therefore, the body is in harmony

11. Yin • Passive • Dark • Inside • Quiet • Negative • Feminine • Night • Cold

12. Yang • Active • Light • Outside • Noise • Positive • Masculine • Day • Hot

13. Qi • Known as the vital energy that pervades the entire universe • eg. Heat, light, sound • Regulates circulation of blood, process of digestion, autoprotection of organisms and vital activities

14. Human Body • A person has certain amounts of Qi at birth • Qi is depleted by ADLs, and augmented and rebuilt by food and air

15. Illness • Depletion or imbalance of Qi causes ill health

16. Absence of Qi = Death

17. Western Philosophy • Looks at diagnosis, causes of disease, treatments, and symptoms

18. Yin Yang Philosophy • When vital forces of the body are in balance, positive health occurs • Diseases occurs when imbalance is present and is seen as a struggle between Qi and disease

19. 6 ExcessesDiseases Originating from Outside the Body • Wind: diseases that arise suddenly and changes quickly • Cold: Part of the body or whole body feels cold which causes fluids to congeal in the body

20. Excesses (cont.) • Heat: Part of the body or whole body feels hot. Heat injures the body • Dampness: damp weather or comes in contact with moisture for a long time

21. Dryness: attacks fluids of body Summer heat: pronounced fever and sweating. Dampness always accompanies this excess

22. 7 Excessive EmotionsDiseases arising from inside the body • Happiness • Anger • Pensiveness • Sadness • Fear • Anxiety • Worry

23. Yin Yang Perception of Illness • Looks at signs and symptoms to find energetic imbalances • Looks for disease originating from outside the body • Looks for diseases originating from inside the body • Emotions are linked to the five elements – excess results in illness

24. Nature of FoodHot • Lychee • Cookies • Mango • Sugar/candy • Beef • Chili/pepper • Lamb • Ginger • Deep fried foods

25. Cold Foods • Honeydew • Tomato • Banana • Pear • Melon • Cucumber • Seaweed • Cold drinks

26. Neutral Foods • Apple • Grape • Papaya • Rice • Flour • Chicken • Milk • Soy drink • Tea

27. End of Life Issues:A Cultural Perspective • Chinese culture is very hushed about talking about illness and death • Seen as a “weakness” • To openly discuss death and dying is taboo and disrespectful • Important not to generalize the culture

28. To Tell or Not to Tell • Don’t want to cause worry/anxiety • Don’t want to cause fear • Worried that the person will give up hope and be upset • Stigma of the illness • Person will become depressed andstop eating

29. Strategies • Focus on the hope of getting better but prepare for the worse • Take the person’s perspective ie. what happens if the client doesn’t see him/herself get better? This adds to more worry/anxiety because person has been told he/she would get better • Use non-threatening terms ie. tumor instead of cancer

30. What If I Get Asked? • Family has requested that health care provider does not tell client that he/she has a serious illness • Ethical dilemma – should health care provider tell the client if asked by the client?

31. Strategies • Ask yourself, what is your agenda? • Let the family know that you will not talk directly about the illness but if asked, you will ask the client what he/she understands • Paraphrase the client’s words • Also, ask client what he/she wants to know • If client indicates information regarding illness, ask client “Who do you want to hear the information from?”

32. And if the family continues to choose not to tell?

33. SO WHAT?

34. Talking About the Illness • Illness is very private. Cancer is seen as contagious by many of the elderly • Talking about illness brings the spirit down • Talking about illness can lead to depression • Illness is seen as a weakness

35. Strategies • Try to get the client’s understanding of the illness. • Assess what the client’s past coping mechanisms were for other illnesses. • Find out what the client’s goals are. • Assess how they perceive you can help them.

36. DNR • Greatest fear is that health care professionals will do nothing (ie. no treatment) to help loved one • Fear that health care professionals have given up hope when family still has hope

37. Strategies • Explain that DNR does not mean “Do Not Treat” • Explain that all will be done but after one dies, no CPR will be performed. Give specific examples • Support the use of home remedies, medicines

38. View of Health Care Professionals • Chinese view doctors an an authority figure • Some do not question the views of doctors and will go by what he/she says • Nursing is not viewed as an honourable profession because it is “dirty”. • Focus of the medical profession in HK/China is on cure. • Nurses in HK/China are trained differently thanhere (different philosophy)

39. Strategies • Assist clients to understand what the roles are of your various team members • Clients often will listen to you but may check your information with GP or family member who is a physician • Communication within your team is important so that the same message is being given

40. Involving Children • Education commitments outweigh being with parents. Children are encouraged to visit but not to take on tasks because it may interfere with school • School is a strong value in the Chinese culture • Doing well in school maintains integrity and parents’ peace of mind • Good grades and success save the face of the family

41. Strategies • Children may be reluctant to talk to health care professionals as they are viewed as outsiders. Involve school counselors, public health nurses with permission of the parents (and children if old enough) • Honor the value of education. Be careful of your own judgements and the judgements of staff if the children do not visit very much. • When children do visit, parents tend to find tasks that they can help with • Feel out if the children wantto talk to you

42. Family Structure • Many elderly people choose to live with the eldest son • Role of eldest son is to look after the parents • Role of D-I-L is to help look after the in-laws • Daughters are expected to help out because the son’s work must not be disturbed

43. Decision Making • Related to the family structure. In a traditional Chinese family, the eldest son is responsible for decision making • Son may be overseas, therefore, decisions may not be made here. Other sibling(s) will often contact oldest son to make decision • If son is a child, husband may defer decision to client’s brother or a relative who may be in the medical profession

44. Strategies • Assess for a clear overview of the family structure. Spokesperson may not be the same person as the decision maker • Find out what services are appropriate when planning discharge to home • Assess who is living at home and roles that they play ie. children • Females may often have to do the personal care as the male client may not want strangers

45. To Feed or Not to Feed • Value of food is so important to maintain yin/yang balance • Guilt suffered by family if the client is not eating • Withholding food and water contradicts the need to replenish Qi

46. Strategies • Find out what the client and family’s wishes/goals are • Help family feed the client for as long as possible • Tube feeds and IVs - discuss pros and cons and let family decide • Be aware of your own agenda and values • Key is providing options, negotiating with client and family, and supporting them with their decisions

47. Death • Death is a bad omen • Death is not perceived as part of the natural life cycle – seen as the “enemy” • Bad luck to die at home • If chooses to die at home, client can only die in the son’s home (preferably the eldest) • Cannot die in the daughter’s home • Family cannot visit other people’s homes or give gifts until a month after the death

48. Strategies • Prepare client and families for the emotional, spiritual, and physiological changes during the last days/weeks of life • Provide options where the client may die • Support the family in their decisions • Refer family to resources in community/hospital/residential care

49. After-life • Those who are Buddhist may follow the tradition that the body may not be moved for 8 hours (some for several days) • Rituals – ie. special clothing for the deceased, money, jewelry, comb to accompany body • 7 days post-death: spirit comes home; turn on all lights in home, leave food out • 49 days – wear white or blue flower in hair to display grief and mourning • To honor guests that come to the service, give white envelopes with money and candy; provide a 7 course meal

50. Strategies • Ask family if any special rituals or religious requests after client dies so you can help prepare the unit ahead of time or if at home, help family keep their loved one there until transport to funeral home • Ensure privacy and allow the family to spend time with their loved one • Allow time for questionsregarding the death