End of Life Issues

1. End of Life Issues Gero 300 Chapter 16 Nov 2008

2. Introduction • Technology today has made is possible to sustain the physical body for a long time after the cessation of brain activity. This raises complex legal and ethical issues. How long should life be prolonged, should terminally ill people have the right to choose to die with assistance? There is a long trajectory of dying before death occurs. • Death in our society is influenced by values, beliefs, social and institutional arrangements

3. Current issues in D and D • In 1997 73% of deaths occurred in hospitals by 2002 this was 68.7 % due to in home palliative care and hospice care. In 1950 the figure was 45%. If you are in a LTC facility you are likely to die there or in hospital if you are transferred there. This may not be considered a “good death” by many due to the medical/curative model • When death occurs is problematic, brain stem or whole brain death is usually a marker and death is when the whole brain ceases to function.

4. Dying • In 1969 Kubler-Ross developed five stages of dying-see page 419-DABDA. These stages are not linear or sequential. • Dying individuals usually have a form of “crisis of meaning”. This can take the form of review, reflection, spiritual engagement, an attempt at life coherence, redemption, integrity. • QALY’s-page 419. Many people in the dying trajectory look at QALY-continuing in the present state or a good death.

5. Valuing Life • VOL is an existential concept around the reason for living. Issues as to whether cognitive loss is worse than functional loss, the issues of chronic pain or lack of independence and psychological well-being. • Fear of death-fear of the unknown or the dying process-read middle of page 420 • QOL-five domains-pain and symptom management, avoid inappropriate prolongation of dying, achieving a sense of control, relieving the burden of others, strengthening the relationships with key people.

6. Value of Life • Read section 420-421 on Role of religiousness • Trajectory-refers to a pathway of dying from sudden and unexpected to anticipated and awaited. As these are often health status determined, death is often described in physiological terms. • Dying can include the physical symptoms of fatigue, nausea, insomnia, excessive sleeping, a shutting down of physical function, not eating or drinking. Psychologically it can present as depression, lack of control and a lack of communication.

7. Care of Dying • When we die we expect to have our physical, social, and emotional needs looked after. This is often termed “comfort care”. This is defined as a state of ease, relief from discomfort, free to take control when you can of the dying process. • Note advances in technology are not always synonymous with comfort care. See middle of page 422. It is important that Advance Directives are discussed and planned and legal and clinical practices are reviewed for all parties involved.

8. Dying • Due to chronic disease the dividing line as to when you are ill or when you are dying is often blurred. A balance between honesty and compassion by all involved in care is critical for a good death. Cultural attitudes and rituals must be understood and observed. Different religious practices have many different ways to approach dying and the dying trajectory.

9. Dying • Death in preliterate society believed in some form of afterlife if we examine burial rites and tombs. The dead were often given special powers and influences and different cultures ascribed different methods of both performing dying rituals and communicating with the dead. • Eastern religions tend to believe in transformation and transmigration, rebirth and regeneration. Death is part of life and inescapable.

10. Western View of Death • We have the concepts of divine and natural law where death was an integral part of human existence. The dead were buried by church ritual and placed in graves, marked or unmarked. As life became more secularized death took on a romantic view and there were many ornate memorials and expressions of grief. • We then experienced an epidemiological transition-most of the deaths shifted from children and young people to old people

11. Hospice/Palliative Care • Both individuals and families can receive care from hospice including bereavement care. Care plans are unique to the individual to meet physical, emotional and spiritual needs. Not all care-givers can manage at home hospice from an emotional or cost position and this will be affected by the changes in demography in the future. Read pages424-425 • Hospice is not for everyone both individuals and families • Symptom management and control becomes more complicated in the last two weeks of life and appropriate and adequate pain management/sedation is very important.

12. Facing Death • The Right to Die-Many MD’s let terminally ill people die without subjecting them to intrusive treatment-the cure being worse than the disease. • To prolong life raises questions about human dignity and choice. This raises the question about Euthanasia-passive or active • Passive-withholding or withdrawing medical treatment of the hopelessly ill. Read pages 426-427 for definitions and issues

13. Managing Death • Should this be guided by advanced directives-sometimes called living wills. AD specify how an individual wants to be treated if they become terminally ill and can no longer make decisions for themselves. In BC this is done by a Representation Agreement. AD’s are completed by a low percentage of people ranging from 4-20%. Read page 429-430 • Active Euthanasia-assisted suicide-someone helps the terminally ill or disabled to end life

14. Dying • This requires consent, capability, qualified assistance. Suicide is legal, assisting a person to die is not. • Euthanasia means the good death and proponents feel one should not have to endure pain and suffering at the end of life if you choose not to. Opponents see this as murder, and the edge of the wedge into killing the less fortunate, the disabled and the aged with dementia.

15. Suicide in the Elderly • 65 plus make up about 12-13% of population but they commit 17-25% of all suicides. A higher % in the 85+ group. • Elderly white males, living alone, in poor health and possibly abusing substances are at high risk. Those who fall into this group often present with social isolation, depression, multiple losses, financial hardships and chronic illness. • The elderly often suicide without warning and are often more likely to be successful.

16. Bereavement • The death of a spouse is associated with increased risk of illness and mortality in the bereavement period. • Most women go through three stages-preparation, grief, mourning and adaptation. This period can be stressful physically and financially. Anticipated grief vs unanticipated grief. • Widowed older adults complain of being lonely, depressed and stressed.

17. Family and Friends at the end of Life • There are many families who do not feel that end of life care is well handled in our current medical facilities-see middle page 430. Problems with communication and decision making or types of treatment. Families go through a grieving process, which also requires assistance and care-read page 431

18. Bereavement • Those who adjust best are those who are active, take on new roles and keep a friendship network. The relative lack of financial resources places a lot of burden on the elderly female-see the discussion on pensions and economics. • Intimate ties with family helps with bereavement. Friendship patterns alter. Reduction in income may be the single most important variable in the long run to distinguish widows from married women in the same cohort.

19. Widows • Men experience greater adjustment to widowhood. Unprepared to assume new roles. Have difficulty with practical demands. Often health declines and they are subject to depression and become vulnerable to biological changes. Widows over 75 have high mortality rates compared the general population. They are more likely to live alone and receive less support from their family. Young widows remarry but older widows tend not to.

20. Death of Parents • By age 62 75% of adult children have had both parents die. This represents the loss of a long term relationship and impact psychological well-being. Research suggest losing a mother is more significant than a father because of interpersonal and relational aspects. • When parents die, adult children may feel guilty or relieved. Sons react differently to daughters and gender reactions to death and dying are consistent with other issues in the life cycle.

21. Death Rituals • Death rituals are rites of passage and serve many purposes-see middle page 432 • Funeral traditions vary in different cultures and belief systems • Currently there is a recognition of the significance of dying in our society. There is a Senate sub committee looking at end of life care in Canada and there are fiscal benefits in the CPP. Review 434 for ongoing recommendations made by the Senate report.