Section One - Palliative Care
1. What is palliative care?
Palliative care is designed to help patients and families facing a life-threatening illness. It is meant to assist persons who are ill to achieve the best possible quality of life. Palliative care is also referred to as end-of-life, or comfort care, but it is in fact a philosophy of care.
Palliative care focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.
Palliative care teams are composed of specially-trained doctors, nurses, social workers, chaplains and other specialists who work with a patient’s doctors to provide holistic support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
When deciding on whether it is time to begin palliative care, it is important to have a discussion with your health care providers who can provide input and guidance about what is available to you.
2. Isn’t palliative care the same as assisted-suicide (Medical Assistance in Dying)?
No, palliative care is treatment of the various factors that can impact a person who is seriously ill, but today it is understood as care at the end of life. The goal is to provide relief from difficult symptoms, including things like:
- Shortness of breath
- Loss of appetite
- Problems with sleep
- Spiritual Suffering
Hospice care includes palliative care, as it is care at the end of life. Palliative care however, can be received at any stage of an illness. If you are in need of finding ways to be more comfortable, or to improve your quality of life, palliative care may be of assistance to you.
3. Does a person have a right to know the extent of their illness? How is it helpful for the person to know the details of their medical condition?
It is a legal right to be informed, but the personal reasons for this information are even more important for faith-filled people.
Catholic teaching says that people who are capable should be fully informed of their condition, in a careful, gentle, and perhaps gradual, way. First, knowledge of the extent of the illness will help them plan for the future, no matter how limited that might be, including how they will live out the time left to them. Second, it allows people to make good decisions about medical treatment, and to explore options for remaining at home, being admitted to hospice, etc. Third, it allows people to say goodbye to their loved ones and to reconcile, if possible, with any people from whom they have been distanced. Fourth, it allows people to receive the Sacrament of the Sick and the last rites, as well as allowing them to make peace with God.
4.What is an advance directive/care planning?
An advance care directive is put into place when people are no longer capable of making their own decision.
This process is called advance care planning is really the process of letting people around you (family, caregivers, doctors) know your wishes for care. It is particularly important for those who may have a serious health problem or illness. It becomes an opportunity to express your fears and have them dealt with when necessary.
The discussion needs to include these points:
- • information on how the future might unfold
- • a discussion on what your care needs might be
- • possible choices for your future care
- • a discussion on what future decisions might need to happen
These discussions help to guide your family, friends and health care team so they fully understand your personal wishes about your care. It will also assist them if decisions need to be made at a time when you are unable to make them yourself.
It is also a good idea to write down your wishes or instructions regarding your health care. The term used for this is an advance care plan, although people do still refer to it as a living will.
Another important step in advance care planning is choosing someone you trust to speak for you if you are too ill to speak for yourself. This designate, when appointed legally through a will, is known as the person with power of attorney. Your doctors and nurses will consult with this person in making decisions and to guide your care.
Your advance care plan, when written, should include the name of the person who you intend to have power of care for you. It is important that this written document be given to your family, the person with power of care and your health care team.
It is important to know that you can make changes to your advance care plan at any time, even after you have given it to others. If you change any part of it, be sure to put the date and your initials or signature beside the changes, and share the updated copy with your substitute decision maker and health care providers.
You can find a resource for advance care planning in Ontario at http://www.makingmywishesknown.ca/
http://www.advancecareplanning.ca/making-your-plan/ (Starts the Conversation)
5. When do I start to plan?
It is never too early to start having discussions about what your wishes and desires will be in case of a serious illness, or medical situation. Starting the conversation early allows for more relaxed discussions and for time to research answers to possible questions. The time to start is now.
The decisions you make can change over time if you wish, or if circumstances change, so you are not confined to an advance care plan forever, as long as you express and write out new desires as they arise.
6. When do I start the conversation about palliative care? With whom?
The palliative care conversation often starts with a medical diagnosis.
A good first start for a palliative care conversation is with your family, care givers and health care providers. This should happen when you are feeling distressed about the situation you are in with a serious health issue, whether that stress be physical, emotional, mental or spiritual.
7. Does starting palliative care treatment mean I have to give up other community supports?
No. Palliative Care teams will work with your preexisting care giving team to ensure your needs are met in the best possible way. That may mean continuing with community supports already in place, or transferring to another source that will have more positive outcomes for you.
It will ultimately depend on your individual situation and condition, and, in a sense, supports will be provided according to that, medical, nursing and spiritual. Some people are able to be looked after at home, supplemented by home visits from physicians and health care workers who will look after how medication is provided, etcetera; people who need more supervision may end their days in a long term care facility; where available, people who are dying receive comfort care in hospice, where health care workers also supervise their care: others receive similar care in palliative care units in hospital.
Counselling support is available through Catholic Family Services and other agencies, parish nurses make home visits in some areas, The Diocese of Hamilton, through the Family Ministry Office can provide contact information for other counsellors and supports. Pastoral workers and priests from the person’s parish will visit at home, and both, as well as chaplains, can be requested to visit in most facilities.
8. What does palliative care have to offer me? Isn’t it just about pain control?
In Canada palliative care offers a wide variety of support, it:
- • considers the fears and stresses of the patients and their families;
- • closely monitors physical symptoms such as pain, nausea, loss of appetite and confusion;
- • considers the emotional and spiritual concerns of patients and families;
- • ensures that care is respectful and supportive of patient dignity;
- • respects the social and cultural needs of patients and families;
- • uses a team approach that may include volunteers, social workers and spiritual leaders in addition to medical staff.
- • does not necessarily end when someone has died. Family members may need support as they grieve the loss of a loved one and try to manage numerous strains and stresses. Bereavement programs are often part of the comprehensive care offered as part of palliative care?
9.How can I contact someone from palliative care?
Hospice Association of Ontario's Life Line
The Hospice Association of Ontario End-of-Life Information Service provides information about a wide range of hospice palliative care services and resources available across Ontario, including: hospice palliative care programs, hospice palliative care units, community-based services, pain and symptom management services, bereavement support services, and palliative care education.
Hospice Palliative Care Ontario
Hospice Association of Ontario and Ontario Palliative Care Association joined together to form one provincial organization in April, 2011 to provide leadership for hospice palliative care throughout Ontario.
CancerChat Canada – Ontario – On line Support
Canadian Virtual Hospice
Description: Information and support on palliative, end-of-life care, loss and grief
Hospice Care in the Diocese of Hamilton
Bob Kemp Centre for hospice and palliative care
Phone: 905 387 2448
Phone: 905 308 8401
Phone: 905 387 2448
Ian Anderson House
Phone: 905 337 8004
Stedman Community Hospice
Phone: 519 751 7096 x 2500
Hospice of Waterloo
Phone: 519 743 4114
519 836 3921
Residential Hospice of GreyBruce
Phone: 519 370 7239
10. Who provides palliative care?
A variety of health care providers contribute to palliative care teams, depending on the needs of the patient and the family. Nurses, family doctors, social workers, spiritual care providers, palliative care specialists, occupational therapists, physiotherapists, home care and personal support workers, volunteers, and pharmacists may be involved.
11. Who qualifies for palliative care?
Any person with a life-limiting illness, including children, qualifies for palliative care. From the time of a diagnosis of an illness that will shorten someone’s life, patients and families benefit from palliative care.
12. Where is palliative care provided?
Palliative care can be provided wherever the patient lives – home, long-term care facility, hospice or hospital. The best place to receive palliative care is the environment that works best for the patient.
At times caregivers may have feelings of guilt if they are unable to provide care at home for their loved one. Although caring for someone at home can be a beautiful experience, it can also be demanding and each person has to assess what is best for their loved one and themselves, since an ongoing loving relationship is most important during this time of peoples’ lives.
The following website will provide you with a brief overview of some of our choices when it comes to palliative care: http://www.virtualhospice.ca
Some people choose to stay at home for as long as they can. Family members, with support from the health care team, may decide that they want to be the main caregivers in the home. Many communities have supports in place and services to help patients and families provide care at home, including these:
Family caregivers need time to rest and many home care programs offer respite programs that provide short-term patient care for several hours or even several days.
See also: Caring for Yourself
Home care programs
Most Canadian home care programs offer palliative care services in the home. Professional nursing care is often available through these programs, along with other home-based support services.
Sometimes people will pay for private home care services because they need extra help. Private home care companies supply part-time, as needed or around-the-clock care. However, unless you have insurance, you will have to pay for these costs yourself. Private services may include:
- • nursing/medical care
- • personal care
- • cleaning
- • cooking
- • companionship
- • transportation
Many provincial hospice associations offer hospice volunteer support. Hospice volunteers are carefully screened, selected and educated to offer emotional, spiritual and practical support to individuals and families living with advanced illness. Volunteers are often matched with families and are available to talk on the phone or make in-person visits.
Palliative care programs
Some palliative care programs offer in-home visits from nurses or doctors who are specialists in palliative care. Even if in-home visits are not offered, program staff may still be available to offer telephone advice on pain or how to manage other symptoms. These programs are often run through hospitals. Check with your local hospital or government home care office to see what palliative care is offered in your area.
If you choose to stay at home, remember that at any point you can change your mind about where a death is going to happen. Some families decide they want a home setting for as long as possible. If you eventually choose to leave home, many other facilities offer palliative care.
A residential hospice provides full-time palliative care, generally in a home-like setting. Some hospices will also take care of the person who is ill for a few days at a time so that caregivers can get some rest. Unfortunately, there aren’t enough residential hospices to meet the needs of everyone who needs palliative care in Canada.
Residential hospices often give priority to people who are nearing the last stages of life and are not expected to live more than a few months. Hospice staff will pay close attention to physical symptoms. Symptoms such as nausea and constipation need to be treated so that the patient can be as comfortable as possible. Staff will also care for the patient’s emotional and spiritual health. Patients may need to confirm that their expectations for medical treatment match services that can be provided in the hospice.
Sometimes the care provided in a residential hospice is not covered by the public health system. In that case, the family will likely be required to pay a daily charge. Sometimes private or group insurance will cover these costs.
Many hospitals have staff with special training in palliative care. These people provide support and work with the patient and the patient’s health care providers.
Some hospitals have special palliative care units or wards to help manage symptoms that are more difficult. These units offer privacy and a more home-like environment, however they are generally not meant for long-term stays. Instead, symptoms are brought under control so that patients may be transferred to another unit of the hospital, to a hospice or home.
Personal care home
Personal care homes, also known as nursing homes, regularly provide palliative care services. You don’t have to be a long-time resident to receive palliative care in a personal care home. People with advanced illnesses will sometimes move into a personal care home so that they can receive palliative care.
Personal care homes may have access to teams that have special training in palliative care. These consultants provide support and work with the patient, the family and the patient’s health care providers to help with symptom management. They also offer support in difficult decision making to ensure that the best care is provided.
13. Where can I get financial help?
In Ontario there is no program specific to those receiving palliative care however there are four publicly funded programs that may cover costs for those who meet eligibility criteria. For further information, visit the website provided below or call the office.
Ontario Drug Programs
Service Ontario M-1B114, Macdonald Block 900 Bay Street
Toll free : 1-866-532-3161
Canada Pension Plan
The Canada Pension Plan (CPP) is best known as a retirement pension, but it also provides disability benefits to CPP contributors and their families. If you have children and are receiving a disability benefit, your children may be eligible for the CPP children’s benefit. In order to be eligible for this benefit, you must:
- • be under 65;
- • have earned a specified minimum amount and contributed to the CPP while working for a minimum number of years;
- • have a severe and prolonged disability as defined by the CPP legislation.
Life insurance will often provide for what is known as a living benefit. Such a benefit allows for people who have been diagnosed with a terminal illness to have a portion of their anticipated benefit paid to them in the years before their death. Taking such benefits will reduce the amount of the insurance benefit ultimately paid to the beneficiary of the insurance. A financial advisor can help you make these kinds of decisions.
People who have costs related to health-related goods and services, or additional living costs due to a disability, may be eligible for tax credits. To find out more about tax credits that may be available to you, consult with a financial advisor about the following:
Wholly dependent person tax credit
A taxpayer may be eligible to claim a ‘wholly dependent person’ tax credit for a child less than 18 years of age or of any age if the child is mentally or physically impaired. To be eligible to claim this amount, an individual must not have a spouse or common-law partner, or they must be separated from their spouse - they cannot be supporting their spouse financially, nor can they be supported by their spouse financially; they must have supported the child in the tax year; and lived with the child in a home maintained by the individual.
Eligible dependent tax credit
A taxpayer may claim this credit for each person he/she supports who is dependent due to a mental or physical disorder and who lives with him/her in the residence that he/she maintains. Eligible taxpayers can receive a tax credit for their parent or grandparent by blood, marriage, common-law partnership, or adoption; or for their child, grandchild, brother, or sister, by blood, marriage, common-law partnership, or adoption if he/she is under 18 years of age or has impairment in physical or mental functions.
Family caregiver tax benefit
The family caregiver amount (FCA) is a non-refundable tax credit that helps Canadians with the costs of caring for a dependent with a physical or mental impairment who is living with the taxpayer. To be eligible, the dependent must rely on support for physical/mental impairment and have little or no income. Eligible dependents are relatives of the tax payer, including adult children, parents, spouses/common-law partners, and grandparents. Eligible individuals may be able to claim up to an additional $2,040 in tax credits (translating to a maximum of $306) above what they can already claim for an eligible dependent.
Disability tax credit
The disability tax credit (DTC) is a non-refundable tax credit used to reduce income tax payable on the income tax and benefit return. A person with a “severe and prolonged” impairment in physical or mental functions may claim the disability amount once they are eligible for the DTC. The purpose of the DTC is to create greater tax equity by allowing some financial relief for disability costs, since these are unavoidable additional expenses that other taxpayers don’t have to face. Caregivers of dependents or spouses/common-law partners may be able to have the DTC amounts transferred to their tax return if the eligible person does not need to claim some or all of certain non-refundable tax credits to reduce his/her income tax to zero.
Compassionate Care Benefit
Compassionate care benefits are Employment Insurance (EI) benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is “gravely ill.” You can receive compassionate care benefits for a maximum of 26 weeks within the 52-week period that starts during one of the following weeks, whichever is earlier:
• the week the doctor signs the medical certificate; or
• the week the doctor examines the gravely ill family member; or
• the week the family member became gravely ill, if the doctor can determine that date (for example, the date of the test results).
To find more go to:
14.How do I build my team?
Palliative care teams work together with your other doctors, you and your family. Close communication is very important. Remember the palliative care team is meant to provide support to you and your family during each step of an illness, so they will make every attempt communicate with you, your family and your other doctors as often as necessary.
The principal members of your team include a doctor, nurse and social work palliative care specialists. Massage therapists, pharmacists, nutritionists, chaplains and others may also be part of the team.
15. What are my rights when I am a caregiver?
At some point many people, in particular family members, are called on to be a caregiver when someone close to them as a serious, life-limiting illness. The responsibility for caregiving is easiest when shared, so caregivers need to reach out for support from other family members and friends whenever possible.
If you have legal power of care, you have the right to intervene on behalf of the person who is ill when they are unable. It is easiest if this is done in consultation with others, in particular family members, but the final decision is the responsibility of the person with power of care.
If the patients are capable of making their own decisions, you as caregiver can provide feedback to the patient, but they will have final decision making power. It is your right to speak honestly and clearly about what you can and cannot do in providing care, so that the proper supports can be put in place without anyone feeling overwhelmed or too burdened.
6. How do you empower a person/caregiver to ask/demand for proper palliative care?
When people/caregiver are dealing with the stress of a serious illness, they may be hesitant to ask for more assistance. It is important to help them to see that palliative care exists to assist people in need and that it will make this time in their life better for all involved. It is good to recommend they begin the conversation with their doctor, who can provide support and input on how to get their needs met.