When the Time is Near Palliative Care Education For Front-line Workers In First Nations Communities cerah.lakeheadu.ca

The last hours of living Over 90% of those who suffer a long illness will die The last hours can be the most significant time of our lives The last hours of living is the last opportunity to: finish our business create final memories give final gifts achieve spiritual peace say good-bye

Think about… The importance of final hours which are independent of the site of dying/death Addressing physical, psychological, social, and spiritual needs Skilled around-the-clock care Anticipating medication, equipment, and supply needs Ask if any of the participants have been present during someone’s last hours of living. What did they see? What did they hear? What did they feel? Anything significant stand out for them? Care during the last hours of living is important. It may influence how those present perceive dying and may impact their grief experience. People only die once, so this is the only opportunity given to provide this comprehensive care.

Caring in the last hours If possible, the setting should allow loved ones private, 24-hour access without disturbing others There is a need for regular reassessment of the patient’s condition and the family’s ability to cope with rapid and unexpected changes Caregivers must respond quickly and modify plans especially when a dying person is at home if readmission to hospital is to be avoided Ask the group who they would like to be present when the patient is dying. Where would they like to be? What do they think will be important to them at that time?

Who can receive palliative care in Canada? Any person with a life expectancy of less than six months Any person about whom you can say: “If she/ he died within the next year, I would not be surprised” Any person with an incurable, progressive disease Any person who elects a palliative or comfort- care approach Examples of incurable progressive diseases include Alzheimer’s or congestive heart failure with severe challenges or MS or end-stage diabetes or cancer. Palliative care is considered to be specialized care and is often considered to be quite costly so there are guidelines as to who can be accepted into a palliative program or service. These guidelines are different depending on the program and location of the service.

What to expect weeks to months before death: Social withdrawal, personal reflection, less communication or sometimes a desire to address old conflicts Increased sleep and decreased intake of food and water Postponing death until meaningful events occur Saying good-bye, looking for permission to die, expressions of soul weariness (i.e. “I’m tired of living”) Caring for the Terminally Ill: Honouring the Choices of the People, p. 66-67 (CHPCA, 2008) These are all signs that you might see weeks to months before someone dies. You may see one or all of these, or none depending on the individual. It is not unusual for an individual to withdraw into themselves and away from people who love them when they are dying. This can be viewed as a conservation of energy or a realization of how isolating the journey of dying is for many people. This is often very difficult for families to understand or adjust to as they feel left out. Palliative care providers need to provide additional support at this time and normalize the experience for them. Share an example of one of these signs from your experience or ask the participants what they have seen. Encourage the participants to read pages 66-67 in the Honouring the Choices book.

Communication with the individual who is unconscious Plan ahead to reduce family distress(Caring for the Terminally Ill: Honouring the Choices of the People, p. 92) Assume the individual who is unconscious can hear everything Encourage families and friends to create an environment that is familiar and pleasant Recognize touch as heightening communication A common saying in palliative care “hope for the best but plan for the worst” Some ideas to make the environment of an individual who is unconscious more pleasant are: Music Environmental sounds such as wind, water, etc. Story telling Gentle touch Familiar blankets, pillows If at home, soothing, familiar smells www.cerah.lakeheadu.ca

Choices about eating & drinking 2/3 of individuals who are terminally ill experience a loss of appetite The reduced need for food is a normal part of the dying process Most individuals who are dying are not hungry or thirsty Weight loss is expected in an individual who is dying A dry mouth is also a common occurrence Caring for the Terminally Ill: Honouring the Choices of the People, p. 38-42 Eating and drinking choices can often be very challenging in end-of-life care. So much of what we do is around food – we celebrate with food, we nurture with food, we comfort ourselves with food. Often there is a concern that someone will “starve to death.” Families need a lot of education and support around feeding issues. www.cerah.lakeheadu.ca

If a person stops eating but is still taking in fluids: S/he is able to live for weeks to months Their feelings of hunger are blunted Their mental function may remain normal until just before death Sometimes families need to hear repeatedly that their loved one is not feeling any hunger while s/he is dying despite not having eaten for quite sometime. www.cerah.lakeheadu.ca

If a person stops drinking… S/he may typically live 1-3 weeks but in rare cases may live as long as 6 weeks Dehydration results in a gradual loss of consciousness Death while dehydrated may be more peaceful and comfortable than death with intravenous (IV) fluids Good mouth care is an important part of comfort care Families can take an active role in keeping their loved ones lips moist and mouth hydrated. It is not unusual for palliative care nurses to teach families how to do this so they can take an active role here.

Reasons to recommend the use of tube feeding or IV fluids Artificial nutrition and hydration can be used temporarily to support a person who may recover from a non-terminal illness May improve comfort for individuals who express hunger or thirst May be used to keep a person alert while awaiting a special visit or event prior to death Client or family members’ religious beliefs or strong feelings may require continued use of these treatments until death It is not unusual for loved ones to have questions about tube feeding or intravenous fluids. In palliative care this issue is assessed on a case-by-case basis. Families will need support around making decisions in these areas.

Reasons not to recommend tube feeding or IV fluids (1 of 2) Can lead to increased lung secretions, shortness of breath, swelling, edema, and incontinence Lack of IV fluids and tube feeding often results in a gradual, peaceful loss of consciousness Artificial nutrition may prolong the dying process Most dying people do not experience hunger or thirst

Reasons not to recommend tube feeding or IV fluids (2 of 2) Restraints may be necessary to hold IVs or feeding tubes in place which may distress the person and/or family members Tube feeding does not provide taste pleasure or social contact around meals

Some suggestions about making good decisions around eating and drinking Evaluate the person for treatable causes of reduced intake such as depression, painful teeth, or other correctable problems Consider a trial of an appetite stimulant Acknowledge the emotional and social meanings of food Recognize the naturalness of stopping eating and drinking at the end of life

Other physical changes Sore mouth Difficulty breathing Skin problems Feeling weak Constipation Not sleeping well and feeling tired Caring for the Terminally Ill: Honouring the Choices of the People, p. 43-52 These are some signs to be aware of during the dying process.

Delirium (1 of 3) A disordered altered mental state that may present with hallucinations, agitation, paranoia, sleeplessness, confusion, moaning and groaning, incoherent speech and continual aimless physical activity Caring for the Terminally Ill: Honouring the Choices of the People, p. 69-70

Delirium (2 of 3) May occur in the last 12-24 hours of life Makes the assessment of pain and symptoms extremely challenging It can be devastating for families to watch their loved one in a state of terminal delirium Some possible causes may include brain metastases, and renal and liver failure Early onset of delirium should be investigated as some causes of delirium are reversible If delirium does occur, the increased presence of the palliative care team is beneficial to both the family and the individual who is dying to reduce any anxiety through support and education. It is often devastating for families to watch their loved one in this state. Some causes of delirium are reversible and should be treated. www.cerah.lakeheadu.ca

Delirium (3 of 3) Some suggestions Educate yourself, staff, and families about the difference between pain and terminal delirium Advocate on behalf of the client and their family Do not abandon the client or their family Continued presence of staff may assist in maintaining a calm environment and supporting the family and client

Some changes when death is near Coolness of the skin Decreased alertness Disorientation or delirium Restlessness Decreased intake food and water Incontinence and/or decreased urine output Changes in vital signs (i.e. pulse, blood pressure) Changes in breathing patterns Caring for the Terminally Ill: Honouring the Choices of the People, p. 93-95 Many other physical changes may be present. It is important to educate the family and caregivers about what is happening. They may have many questions at this time, and education about the last hours of living is very beneficial to most people. Often there are questions about someone being hungry or thirsty. Please refer participants to the “Caring for the Terminally Ill” book pgs 93-95.

Signs and symptoms hours/ minutes before death Large fixed pupils Inability to move Faster but weaker pulse Lowered blood pressure Cheyne-Stoke respirations (increasing periods of time in between breaths) “Death rattle” (noisy breathing due to collection of mucus in the throat) www.cerah.lakeheadu.ca

Clinical signs and symptoms of death Total lack of response to external stimulus No muscular movement No reflexes No vital signs: breath/pulse/blood pressure Caring for the Terminally Ill: Honouring the Choices of the People, p. 96 Sometimes it is important to explain what death looks like to families. It helps to reduce the anxiety in those caring for individuals who are dying. www.cerah.lakeheadu.ca

When death occurs What to do if you think death has happened Caring for yourself Caring for the Terminally Ill: Honouring the Choices of the People, p. 96-98 It is important to have a plan in place for when death occurs in the home. Is there a specific protocol which is followed? What happens in your community when an unexpected death occurs in the home? Ask the group if there are any comments or questions at this time. www.cerah.lakeheadu.ca