NURS 306: Hospice Palliative and End of Life Care for Older Adults

Advance Care Planning

"A process whereby a capable (mentally competent) adult engages in a plan for making personal health care decisions in the event that this person becomes incapable (legally incompetent to personally direct) his or her own health care" (Facilitating Advance Care Planning: An Interprofessional Educational Program, 2007) Involves: 1) person chooses a substitute decision maker (proxy), and 2) communicate their wishes about future health care, personal care, and living arrangements to the substitute decision maker (designation of this person requires a written, dated, and signed document) (Touhy et al., 2012) Sometimes referred to as a Living Will, Advance Directive, or Health Directive Successful ACP begins well in advance of serious illness or a crisis situation Priority to encourage Canadians that EOL care planning is important for EVERYONE, not just those with life-limiting illness

End of Life Care

A term used more so in a Canadian context...care of all those with a terminal illness that has become advanced, progressive and incurable. Usually refers to care within the final months, weeks, days, or hours of life.

Approaching Death: Signs and Symptoms

Altered Breathing Patterns- more shallow breathing, Cheyne-Stokes respirations, noisy breathing (death rattle) Changing Circulation- cold and mottled extremities, ↓ BP, weak or irregular pulse, diaphoresis, ↑ dependent edema, anuria or oliguria (none, or very small amount of dark urine) Decreased Muscle Tone- Relaxed facial muscles, lower jaw drops, mouth open, difficulty swallowing, abd distention, possible urinary/fecal incontinence Decreased Senses- ↓ Level of consciousness, blurred or distorted vision, decreased taste and small, probable continued hearing

Types of Grief

Anticipatory Grief- response to a real or perceived loss before it actually occurs Acute Grief- response to loss, often in a crisis, somatic and psychological symptoms of distress occur in waves Persistent Grief (AKA Prolonged/ Complicated)- grief over loss that does not diminish, shadow grief, complicated grief Ambiguous Grief- The long goodbye, when the loss is not complete or uncertain (e.g., dementia, ABI, disappearance) Disenfranchised Grief- when a loss cannot be openly acknowledged or publically mourned (e.g., death of a pet, suicide)

The Language of Death

Canada, the US and other Western societies have frequently been described as death-denying societies What do we actually mean by the term Do Not Resuscitate (DNR)? DNR- but give emergency drugs DNR- no CPR, but shock shock(able) rhythm DNR- but do not intubate or place on ventilator Negative connotations and often associated with termination of care as well as life Contributes to the notion that the family has "given up" on their loved one

WHO (2012) Definition of Palliative Care

Improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Compassionate Care Benefit

In 2004 through EI, the benefit provided 8 weeks leave (6 weeks paid) to eligible Canadians to care for a dying loved one (parents, children, spouses)... minus the 2 week waiting period December 2015 changed to maximum of 26 weeks leave June 2006, expanded definition to include sibling, grandparent, grandchild, in-law, aunt, uncle, niece, nephew, foster parent, guardian, or gravely ill person who considers the claimant to be like a family member, common-law partners, and includes same-sex couples Critical barriers to the successful uptake of the benefit (Williams et al., 2009) Lack of awareness Issues with the application process Two week unpaid waiting period Inadequate amount of time the leave provides Inadequate financial compensation

Driving Factors... Misconceptions about Death and Dying

Increased life span = overestimation of medicine's ability to prolong life Changing demographics, exodus from rural to urban = death as a foreign event Sequestering our older adults away = aging and impact of life-limiting illness is rarely experienced first hand Doing something is better than doing nothing Dying "naturally" means dying "in your sleep"- not from a treatable disease such as cancer, stroke or an infection Few older adults will die "in their sleep..." Almost everyone dies of something

Embracing New Language

Moral and ethical challenges support the need for a more empowering language when discussing end of life treatment options New language... paradigm shift, "Allow Natural Death" (AND) The goals are to: Establish new language that empowers the patient and their family Establish a common discourse (conversations) Establish nurses as change agents and advocates to lead the shift in societal views of death and dying

Access to Hospice P/EOL Care Canada

Only 16% to 30% of Canadians who die currently have access to or receive hospice palliative and end-of-life care services - depending on where they live in Canada Even fewer receive grief and bereavement services Most people have indicated that they would prefer to die at home in the presence of loved ones, yet almost 70% of Canadian deaths occur in a hospital Significant disparities across Canada remained with respect to access to end-of-life care, quality of care and out-of-pocket costs to the patient Canadians living in remote and rural areas, or those living with disabilities, have severely limited access to formal hospice palliative care services

Hospice

Philosophy of care that seeks to support dignified dying or a good death experience for those with terminal illness (associated with 6 months or less to live to be eligible for Medicare coverage in the US). Also used to describe care settings.

Spirituality in Later Life

Spiritual wellbeing at the end of life includes meaningful existence, ability to finding meaning in daily experiences, and the ability to transcend physical discomfort and prepare for death

Dimensions of Hospice Palliative Care Nursing

Valuing - intrinsic value of others, death is a natural process Connecting - Making, sustaining and closing a therapeutic relationship with the care recipient and their family Empowering - providing care in a manner that is empowering for the person and family Doing for - providing care based on best practice in pain and symptom management, coordination of care and advocacy Finding meaning - helping the person and family find meaning in their life and their experience of illness

Life-Limiting Illness

used to describe illnesses where it is expected that death will be a direct consequence of the specified illness. Includes but are not limited to: Cancer Heart disease Chronic obstructive pulmonary disease (COPD) Dementia Heart failure Neurodegenerative disease Chronic liver disease Renal disease