Family Ministry

Palliative Care Information

Palliative care seeks to provide the best possible quality of life for people who have a serious or life-threatening illness or disease. Palliative care views the patient as the main concern during care, treating the whole person, instead of focussing exclusively on the medical issue they are dealing with at the time of need.

The entire goal of palliative care is to provide the best quality of life for the individual.

The Diocese of Hamilton, understanding the challenges for both patient and family during a time of need, brought together a committee of experts to gather the following information to assist you navigate the various needs you may have at this time.

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:

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

Website	http://www.hospicelifeline.com
Description:	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

Website	www.hpco.ca
Description:	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

Website

wwwwww.cancerchatcanada.ca

Canadian Virtual Hospice

Website http://www.virtualhospice.ca

Description: Information and support on palliative, end-of-life care, loss and grief

Hospice Care in the Diocese of Hamilton

Hamilton :

Bob Kemp Centre for hospice and palliative care
Phone: 905 387 2448
www.kemphospice.org

Emmanuel House
Phone: 905 308 8401

Burlington :

Carpenter Hospice
Phone: 905 387 2448
www.thecarpenterhospice.com

Oakville :

Ian Anderson House
Phone: 905 337 8004
www.ianandersonhouse.com

Brantford:

Stedman Community Hospice
Phone: 519 751 7096 x 2500
www.sjlc.ca

Kitchener/Waterloo:

Hospice of Waterloo
Phone: 519 743 4114
www.hospicewaterloo.ca

Guelph:

Hospice Wellington
519 836 3921
www.hospicewellington.org

Owen Sound:

Residential Hospice of GreyBruce
Phone: 519 370 7239
www.greybrucehospice.com

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:

Respite programs
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.

Section Two: End-of-Life

17. Is it okay to accept that it is time to die?

Once a person realizes that an illness or condition has reached the point that a cure through treatment is no longer possible, then the person is faced with the reality of death. Many people go through several different phases of denying death, struggling with the implications of dying and mortality, seeking further medical opinions and so on, but most people gradually come to an acceptance that life as they know it is coming to an end. It is important for our own spiritual and emotional state of mind that we do accept this reality, and many not only accept that it is time to die, but accept that it is God’s time, and they move into the dying stage with this attitude.

18. When it comes to the term proportionate/disproportionate, what does this mean in terms of burdens/benefits of care?

The terms used here are both helpful and pastoral in their approach to making decisions about whether or not to begin or to end a course of treatment. Treatments are judged to be proportionate if they have been shown to be successful in similar circumstances, if they are easy to obtain where the patient is located, and if there are few or no side-effects.

Other treatments are judged to be disproportionate if they are unlikely to have substantial curative results, if they are difficult to obtain for any reason, and if the patient finds them too difficult to tolerate. Catholic teaching says that patients are the ones who should make these judgments in light of their own experience.

19. Do people have a right to know the extent of their illness? How is it helpful for them 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.

20. When do I start to plan?

This is a good question, since the answer is ‘now!’ Catholics have many questions about the end-of-life and it would make sense not to wait until that point to look for answers. People are concerned that their decisions will be in line with Church teaching, and it is important to be informed. There are many sources of information: courses and sessions offered through dioceses by people who are specialists in their fields, Catholic physicians and hospitals, parish nurses where available, and hospices that offer courses and information.

21. Can I change my care plan from prolonging life to comfort?

Yes, if the person has reached the stage where it is clear that treatment is not curative, but is prolonging life, then the person may make the decision to stop that treatment and to opt for comfort care in preparation for the death that will eventually result.

22. What is an advance directive/care planning?

Advance planning directives of any kind mean that a person expresses his or her wishes for future treatment in the event that the person not be capable of making or communicating these wishes. The person should choose someone to speak on his/her behalf and to make decisions in specific circumstances that arise. People are often concerned that heroic measures might be taken that will leave them in a condition that they might reject if capable, e.g., surviving through the use of extraordinary means.

23. Can a person remain pain-free?

Most palliative care specialists say that severe pain can be controlled almost 100% of the time in most cases. Nothing is 100% and even deep sedation might not always be recommended, therefore there are sometimes circumstances where pain cannot be avoided, but on the whole these are rare, and we should feel confident that comfort care and pain management are reliable.

24. How can I make my wishes known about the care I would like in the future?

See #22 above; also consider a writing down your wishes: http://www.advancecareplanning.ca/making-your-plan/

25. Is it okay to take treatment/pain medication that might shorten my life?

Depending on WHY I take these treatments, the answer could be ‘yes’ or ‘no.’ The answer will be NO if I take any treatment or medication in order to shorten my life. The answer will be YES if I am doing so in order to deal with pain and suffering at end-of-life, even if there is a possibility that use of a treatment or drug might contribute to dying a day or so before death would occur otherwise. Catholic teaching says the latter is morally permissible.

26. What kind of supports will I need?

This will 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.

Section Three: Support for the Caregiver

27. How can I get support as a caregiver?

As a caregiver, you will likely need support at some point in the journey. You may find it helpful to talk through your experience with someone. You may need practical assistance or respite care in order to be able to continue some of your normal activities.

The following agencies may also be helpful to you in this regard:

VON offer caregiver support groups
CCAC Care Coordinator
Your local hospice may have a program for caregiver support
Visiting volunteers who come to the home to provide support or stay in the home while you go out are often available in the community through various volunteer services.

28. Is respite or relief care available if/when it is needed?

The need for respite care can be discussed and potentially arranged with your Care Coordinator at CCAC.

29. Can I get home support through community care?

Through CCAC the following care can be arranged:

Visiting nursing in the home
Personal Support Workers for personal care
Spiritual Care (can also be arranged through parish)/Supportive Counselling
Physiotherapy
Occupational Therapy
Social Worker
SLP

30. How can people cope with the stress of being a caregiver?

While caring for a loved one who is ill is a very rewarding experience, it is important to recognize that every caregiver will experience stress at some time. Here are some tips to manage and prevent stress from escalating:

Pay attention to your own needs and notice when you begin to feel tired, irritable, or when you may experience any symptoms of stress at an early stage. Take time out for your own self care before your exhaustion and stress develop and become distressing. Remember it is normal to have these feelings. In order to care for your loved one, you will need to take care of yourself.
Talk with any professionals who may be involved in coordinating your loved one’s care needs. Ask if there is respite available for a couple of hours, or for a few days.
As much as possible, make the necessary arrangements to continue with the activities that you enjoy.
Nurture your spirituality. Take time for spiritual practices that are meaningful and calming.

31. Are there common feelings that caregivers experience?

You may experience a range of emotions. Some feelings will be comfortable and nurturing, while others may be more difficult to experience, such as anger, frustration, exhaustion, loneliness, and grief, as you cope with the losses that accompany illness. Many caregivers struggle with feelings of guilt when they want to get out and do something enjoyable, or perhaps when they are feeling irritable. Try to accept your feelings and be compassionate with yourself. All of these feelings are experienced by caregivers at some point in the journey. You may find it helpful to talk to someone, such as a priest, pastoral visitor, professional counsellor, or close friend who understands you. Some people find it meaningful to write out their feelings.

32. Who can I talk to/get support from?

Trained counsellors are often available through your family doctor, CCAC, local hospice, or the Family Ministry Office at the Diocese. If you have a nurse providing care in the home, you may talk over your concerns with him/her. You may wish to talk to a priest, or seek the support of the pastoral program in your parish. Caregiver support groups are led by the VON and run for approximately four weeks at various intervals throughout the year. Support is also available through various organizations that specialize in a particular illness (ALS Society, Cancer Society, Alzheimer’s Society). You can find information by looking up Caregiver Support (in your area) on the internet where you will find a number of resources, as well as online chat groups.

33. Are there volunteer visitors to the home?

Volunteer home visitors are often available through a local hospice, as well as through the VON and sometimes from your local parish.

34. What does a hospice program for the community involve? Who can access it?

Application for hospice is arranged by your CCAC Care Coordinator if you are making an application while home. A Social Worker will be involved with arrangements during a time of hospitalization. The hospice will arrange for an intake nurse to complete an assessment to determine if the individual meets the criteria for a hospice admission.

35. How can I be of support to someone in need?

It is very important to those who are caring for a loved one that they too feel support. Here are a few practical tips of items caregivers say they needed:

Offer to stay in the home to allow a caregiver some time out
Bring a meal to the home
Walk a dog/offer to care for pets during a hospital admission
Offer to drive children to school/activities or/and help with homework
Be available to listen and understand the difficult feelings that may be expressed
Offer to do some yard work, or shovel the snow
Offer to drive to appointments

36. How might I get support from my parish?

A simple phone call to the parish office will provide you with information on what the parish may be able to offer. You can also speak to the pastor about your needs to see if he knows of anyone who may be able to offer assistance.

37. Is there spiritual care for caregivers?

It is very important for caregivers to continue to nurture their spirituality. Contact the parish and ask to speak to a priest, deacon, or parish pastoral worker. If you have lost connection with a parish, this might be a meaningful time to renew that connection and reach out to your parish family. Spiritual care is available in most hospitals, hospices and in the home through CCAC.

38. Where can I get financial help?

The following on caregiver allowance is taken from the Ontario Caregiver Coalition (http://www.ontariocaregivercoalition.ca/caregiver-allowance.html)

What currently exists?

Currently financial benefits for caregivers in Canada are mainly in the form of federal tax credits or insurance benefits. The following outline the benefits currently available to Ontarians.

Wholly dependent person tax credit

Eligible dependent tax credit

Family caregiver tax benefit

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

• 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:
https://www.canada.ca/en/employment-social-development/programs/ei/ei-list/reports/compassionate-care.html

39. How do I build a support team?

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.

40. What are my rights when I am a caregiver?

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 patient is 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.

41. What kinds of supports will I need?

The kind of supports you need will vary according to each individual/family and personal circumstances; your needs will also change as an illness progresses. From time to time you may simply need some help with household chores, to be able to go out for a walk, or run errands. You may need help in the home to care for your loved one, while you rest. As the needs for care increase, you may then require more professional support and care, such as Personal Support Workers, and/or nursing care.

42. How do you empower a person/caregiver to ask/demand for proper palliative care?

Many of us find it difficult to reach out and ask for help. We are used to giving to others and find it meaningful to be able to so. If you are a caregiver to someone who is seriously ill, however, it is essential that you accept the assistance of other sin order to minimize stress. Remember that others care and want to help out. In order for you to care for someone in the home, you will benefit from the assistance of friends, family and neighbours, as well as professional care in the home. Remember that accepting help from others frees up your own energy to be available for your loved one. If you try to do it all, you will become exhausted and no longer able to care for your loved one. We call this “caregiving burnout”. At first you may find it hard to imagine that you will become tired, but if you have this awareness, and are able to accept assistance, you will find that you can maintain your energy and emotional well-being.

Section Four: Worried about Pain?

43. Can my pain be relieved?

Pain relief can be obtained in almost all situations. After assessing the type of pain and what brings it on, a doctor would normally start with a milder pain medication such as Tylenol and then work up, depending on the response, to a stronger medication taken a regular basis.

The strongest medications include morphine and hydromorphone. When these are introduced in a gradual manner, they achieve effective pain relief without making the patient drowsy and used in this way, they are not addictive. It cannot be too early to introduce these if the severity of the pain warrants it. Although total relief cannot always be achieved, significant relief can be obtained to enhance the quality of life.

44. Can a person remain pain-free?

45. Where can I obtain information about pain relief?

For difficult to control cancer pain, your doctor would have access to a palliative care specialist. They may be within the cancer clinic (pain and symptom management/supportive care). They can also be accessed within the community if it becomes physically difficult to come to the clinic. Within Hamilton, information about the Palliative Care Outreach Team can be obtained from:

Good Shepherd Palliative Care Outreach Team
82 Stinson Street P.O. Box 1003
Hamilton, ON, L8N 3R1;
905-521-1841

46. Is it right to take treatment/pain medication that might shorten my life or make me unconscious?

Depending on WHY I take these treatments, the answer could be ‘yes’ or ‘no.’ The answer will be NO if I take any treatment or medication in order to shorten my life. The answer will be YES if I am doing so in order to deal with pain and suffering at end-of-life, even if there is a possibility that use of a treatment or drug might contribute to dying a day or so before death would occur otherwise. Catholic teaching says the latter is morally permissible.

Providing the intention is to relieve symptoms, one may have to accept undesired side effects, however, when medications to relieve pain are properly titrated, as explained above, they do not hasten death. Properly applied, palliative care seeks neither to prolong life nor hasten death. Relieving the distress of breathlessness may involve the use of medications that can lead to sedation but, once again, the aim is the relief of distress, not to make the patient sedated, even though this may occur as an unintended effect.

Section Five: Emotional/Spiritual/Religious Care

47. Who can I talk to about emotional, spiritual or other concerns?

The most important thing is that you do talk. Serious or terminal illness can be a very isolating and alienating experience. The temptation may be to turn in on yourself, limiting those important human and social contacts that will actually be a source of strength. This is a time to reach out to family and friends, colleagues and neighbours and fellow parishioners. In some cases, the help of physicians or trained counsellors may be called for. But often, what is needed most is a friendly and listening ear. For spiritual support, contact your pastor or lay parish minister at your parish. They may be able to put you in touch with other supportive people and groups in your faith community; a parish nurse, Ministers of Communion to the sick or home visitors.

48. What Sacraments could assist me on this journey?

The Holy Eucharist draws us into union with Jesus through the reception of his body and blood. As food for our souls, it is a means of grace and strength to those suffering the pain and isolation of serious illness. Moreover, the Eucharist draws us into closer communion with the members of Christ’s body, the Church. The Sacrament of Reconciliation (Confession) is also an important means of grace, bestowing pardon and peace and giving us the firm assurance that our sins have been forgiven. From the earliest days, the Church has celebrated the Anointing of the Sick for those suffering from illness and serious injury, commending the sick person to the Lord Jesus that he may save them and raise them up. This sacrament bestows the grace of the Holy Spirit upon a person, helping them to trust in God, to be strong in the face of temptation and resistant to fear and anxiety.

49. Is there a difference between Last Rites and Anointing of the Sick?

Yes, but the terms were often used synonymously in the past. The reforms of the Second Vatican Council went to great lengths to distinguish between the rite of the Anointing of the Sick and the rites to be used when death is imminent.

Generally, it is foreseen that the Anointing of the Sick would take place whenever a person begins to be seriously ill. In that manner, the sick person can be strengthened by God’s grace to confront the challenges of illness. Of course, a dying person should be anointed if he or she has not previously received the sacrament. But the rites referred to as “Last Rites,” more closely associated with death, are the celebration of Viaticum, the Commendation of the Dying and Prayers for the Dead. “Viaticum” signifies a dying person’s final reception of the Eucharist, although this might be repeated if a person lingers near death.

50. How do I find peace?

Inner peace can be elusive at the best of times, and all the more so when facing the anxiety of a serious illness. But peace is more of a by-product than a product! It is the fruit of a right relationship with God and with others. Serious illness may beckon us toward a deeper spiritual life, through more intense prayer, the sacraments or conversations with a pastor or a wise friend of firm faith. It is also a time to seek healing in our relationships, to set aside old hurts and to strive for reconciliation where this is possible. Since people are often troubled about how their loved ones will fare without them, it is important to do everything possible to set our financial and legal affairs in good order.

51. Are there home visits from the parish I attend?

Different parishes often have quite different populations and so pastoral services may vary from place to place. This will be a good time to investigate what a parish offers either by website, phone or personal meeting. Your parish may indeed have a very organized Ministry to the Sick, with a variety of volunteers. Even where parishes lack a formal structure for such activity, you will almost certainly find that the pastor, lay parish minister or deacon is eager to visit you at home and offer spiritual support.

52. Many feelings/thoughts are occurring for me at this time. Are these feelings considered normal? How can I cope with these feelings?

Know that you are not alone, and your feelings of anxiety, fear, disbelief, anger at God, are almost certainly shared by others who are making this same journey. Whether you are sick yourself or in the role of caregiver, this is the time to reach out to others for help. Formal support groups can be a great source of consolation and strength: your pastor or healthcare provider can help to point you in the right direction. At the same time, do not neglect the informal support group that you already have, in your network of family members, friends, work colleagues and fellow parishioners. Find someone with whom you can share your feelings in a safe and confidential setting.

53. Who can I reach out to in order to find support for family healing?

No family is perfect and some, unfortunately, have experienced deep rifts and long-term estrangements. Serious illness may present an opportunity to bridge differences and reconcile. Depending on the nature of the problems, professional counselling and/or mediation may be called for. Sometimes, however, a family member, trusted friend or pastoral care person may be able to act in the role of go-between. Don’t rule out that others might be waiting for you to take the first step, unsure themselves of how to begin. Even where family members may be unwilling to reconcile, this is a time for you to make a gracious act of the will and forgive others from your heart.

Section Six: Future Decisions for Self (Legal, Spiritual, End-of-Life)

54. When is it right to discontinue life sustaining treatment either for myself or for a family member? Doesn’t this seem like euthanasia?

Discontinuing life sustaining treatment is appropriate for two major reasons. One, if it is clear that no cure is going to take place and the illness is irreversibly leading to death, then a decision to stop such treatment would be morally acceptable. This is seen as being realistic about the situation when medical treatment is futile, including the use of extraordinary or disproportionate means. The person is not morally obligated to use such means, especially once it becomes clear that they are mainly serving to prolong life. Catholic teaching does not require people to use such means to prolong life indefinitely, and a person who chooses to discontinue is now facing the reality of death and can prepare for that.

Second, if the result of using life sustaining treatment is deemed overly burdensome to the person using it, then he/she can make a subjective decision to discontinue the treatment. One example would be about a person who has undergone years of dialysis for kidney disease. The effort in maintenance of the treatment, the lack of any curative possibilities and/or the limitations on one’s personal life because of the nature of the treatment could lead a patient to tire of the struggle and decide to stop it. Catholic teaching accepts this type of decision as morally right in the circumstances.

In fact, the same two points are sometimes used in making a decision not to start such treatments in the first place, and this is also morally acceptable.

This differs completely from euthanasia since it is not about ending life deliberately, but is about accepting the probable onset of natural death and facing that reality with a good conscience.

55. Am I able to make my wishes known for a time when I am unable to decide for myself?

Yes, we are encouraged to do so, first, because it is important for us to be reassured that our wishes will be respected, and second, because it will be very helpful for those whom you will have designated to carry out those wishes. It is important to have discussed your wishes with the person or persons who will make decisions for you if and when you can no longer do so yourself, so that they are clear about procedures that you would or would not want to have done.

56. What kinds of legal documents should a person have?

Many people have a will drawn up by a lawyer to take care of and distribute their estate, while others write out their own wishes about their property and about the care they desire at the end of life. In Ontario there are two popular documents: Power of Attorney for Property and Power of Attorney for Health Care, both available online from the office of the Attorney General. You name the person or persons whom you wish to speak for you about these matters if and when you can no longer do so, and, if the form is completed properly, those persons will have the legal authority to make decisions for you and on your behalf. Strictly speaking these steps are not necessary since, if you do not appoint anyone, the Substitute Decision Makers Act, 2004, designates someone for you, beginning with immediate members of your family. Many people prefer to have this matter settled in advance and then they know the matter will be taken care of without any delay or possible problem.

57. When and how do I take control of the end?

Many practical matters can be seen to while we are still active and aware. Many people make a will, pre-plan their funeral, appoint someone or more than one to be their Power of Attorney. Those are matters which help us to be in control of our demise, and also make sure that our wishes will be taken into account by those we have asked to speak on our behalf if and when we become unable to do so for ourselves.

From a spiritual point of view, if we are members of a church, it is important to keep the church informed of health matters, to request parish visitation where provided, and to enable church members to pray for us, etc.

58. What is an advance directive/care planning?

Advance planning directives of any kind mean that a person expresses his or her wishes for future treatment in the event that the person not be capable of making or communicating these wishes. The person should choose someone to speak on his/her behalf and to make decisions in specific circumstances that arise. For example, people are often concerned that heroic measures might be taken that will leave them in a condition that they might reject if capable, e.g., surviving through the use of extraordinary means.

59. Is an advance care directive legally binding? Can a person with power of care change those wishes?

Advance care directives should be dated and signed by you with two people as witnesses to your signature if your wishes are to have full legal authority. If you are not able to speak and consent for yourself at a certain stage then the wishes expressed in your directive are to be carried out as closely as possible by your substitute decision maker. The substitute decision maker is legally obliged to follow your directive and cannot legally change your wishes.

Section Seven: Bereavement

Other Resources:

The Art of Dying Well
http://www.artofdyingwell.org/talking-about-death/talking-death/breaking-the-taboo/

Palliative Care – Dying with Dignity
https://www.youtube.com/watch?v=c_XOklotR3s

Short Clips for ARPA on the Palliative Option
https://arpacanada.ca/news/2017/01/24/ending-suffering-palliative-alternative-part-1/

Cardus Canada Speaks on Palliative Care
https://www.cardus.ca/research/health/publications/

60. I am suffering from the loss of my spouse/child/parent/friend/other. Where can I get help/support?

Support is available through your local parish. Speak to your priest or pastoral leader about the support available in your congregation. There may be support available through other area congregations or faith groups. As well you can call the Family Ministry Office of the Diocese of Hamilton for referrals: 905-528-7988 ext. 2250.

If you would like to meet with a bereavement counsellor, there are many people who work directly with a local funeral home. If you are employed, you may have benefits that cover counselling, so ask your supervisor, or human resources department. You can also locate counsellors and psychotherapists who are working in a private practice, by searching for a therapist on the internet, or by contacting the Family Ministry Office. Fees for counsellors services will vary in range from free to over $100.

Bereaved Families of Ontario also offer a wide variety of supports. For more information check out their webpage at http://www.bereavedfamilies.net/.

A list of certified pastoral counsellors is available on the website of the Canadian Association for Spiritual Care: http://www.spiritualcare.ca/

61. What are normal feelings when you are grieving?

All feelings are normal when you are grieving. Often we have been taught that feelings are either “good” or “bad” but the truth is, our feelings are created within us to guide us through life’s experiences. Each individual’s experience is as unique as their own life story and the experiences that influence how we grieve. You will experience feelings that are comfortable for you and easy to accept, such as joy and inner peace, a sense of relief, and renewed hope as you learn to rebuild your life. It is also very common to experience many uncomfortable feelings such as guilt, anger, resentment, hopelessness, loneliness, or jealousy of others who still have their loved one with them. It is important to accept your feelings as a meaningful dimension of your unique experience and personality. If you are struggling or feeling “stuck” in feelings that are difficult for you, it might be helpful to talk things over with a priest, or a grief counsellor.

If your loved one suffered, and you were witness to their suffering, or if you have been a caregiver for a long time, you may also find that you experience flashbacks of those experiences that were particularly difficult for you. You may have dreams about these experiences. This is also a normal aspect of the grieving process, as you reflect on these experiences and in time, release the difficult memories and images. Bereavement counsellors are professionally trained to guide you through any distressing aspects of your journey.

62. What are some of the things to expect in the experience of grief?

he following list provided with permission from Roslyn Crichton, The Coping Centre (Caring for Other People in Grief), 1740 Blair Road, Cambridge, Ontario. 1- 519- 650-0852; e-mail: coping@copingcentre.com; website: www.copingcentre.com

Your grief will take longer than most people think.

Your grief will take more energy than you would have ever imagined.

Your grief will involve many changes and be continually developing.

Your grief will show itself in all spheres of your life: psychological, social, physical.

Your grief will depend upon how you perceive the loss.

You will grieve for many things both symbolic and tangible, not just the death alone.

You will grieve for what you have lost already and for what you have lost for the future.

Your grief will entail mourning not only for the actual person you lost but also for all of the hopes, dreams, and unfulfilled expectations you held for and with that person, and for the needs that will go unmet because of the death.

Your grief will involve a wide variety of feelings and reactions, not solely those that are generally thought of as grief, such as depression and sadness.

The loss will resurrect old issues, feelings and unresolved conflicts from the past.

You will have some identity confusion as a result of this major loss and the fact that you are experiencing reactions that may be quite different.

You may have a combination of anger and depression, such as irritability, frustration, annoyance, or intolerance.

You will feel some anger and guilt, or at least some manifestation of these emotions.

You may have a lack of self-concern.

You may experience grief spasms, acute upsurges of grief that occur suddenly with no warning.

You will have trouble thinking (memory, organization, and intellectual processing) and making decisions.

You may feel like you are going crazy.

You may be obsessed with the death and preoccupied with the deceased.

You may begin a search for meaning and may question your religion and/or philosophy of life.

You may find yourself acting socially in ways that are different from before.

You may find yourself having a number of physical reactions.

You may find that there are certain dates, events, and stimuli that bring upsurges in grief.

Society will have unrealistic expectations about your mourning and may respond inappropriately to you.

Certain experiences later in life may resurrect grief for you temporarily.

63. Are there support groups for people who are grieving?

There are many opportunities for support in our diocese. Some support groups meet and are led by a range of people: a professionally trained grief counsellor, peer support, priest, music therapist, or psychotherapist. Other groups might be a social group where people who have lost a loved one gather for a social time. You may prefer a more formalized support group or you may be looking for a social time with people who share the experience of bereavement. It is a good idea to reach out for this kind of support

Links to the following websites will be helpful as you find the right group or activity for your needs:

Bereaved Families of Ontario
http://www.bereavedfamilies.net/

Family Ministry, Diocese of Hamilton Grief Page on website:
/office/pastoral-offices/family-ministry/healing-and-or-counselling/educational-material-on-grief/

Canadian Virtual Hospice
www.mygrief.ca

64. What other issues might I need to deal with during this time? (Things we felt would need to be addressed in the response to this question were: financial, legal, taxes, being single)

Financial – the loss of your loved one’s income can create financial stress, lead to a change in housing, and other financial concerns. If you are in this situation after a death, you may contact a local social service agency for assistance, ask if the funeral home has any support services for this area, speak to your bank or financial advisor, or to your accountant.

If you have used the services of a funeral home, your funeral director will be able to assist with the details of forms, CPP benefits and other administrative needs that relate to how to deal with taxes and government forms that need to be completed.

Here is a check list to assist you to undertake the various responsibilities now that your loved one has died:

Make funeral arrangements.
You need a lawyer, an account and a financial advisor to settle your spouse’s affairs.
Apply for government benefits (i.e. Widowed Spouse’s Allowance, or Veteran Benefits)
Notify CPP and Old Age Security of your spouse’s death so to avoid overpayments that need to be repaid.
Contact current and past employers for the potential of retiree life insurance, or company pension plan, or accrued pensions that were never paid out.
File life insurance claims. They will require a death certificate and other documentation.
Contact banks, credit unions, etc.
Close other accounts (i.e. provincial health insurance, spouse’s driver’s licence, credit cards, social insurance and passport) and take spouse’s name off of joint accounts.
Revise wills and powers of attorney.
Review your real estate (but do not rush this matter. Wait until the emotions have settled).
Preserve your assests and avoid fraud, or others seeking your assets.

(As written on the Sun Life Financial website; article written by Sheryl Smolkin)

Contact

Teresa Hartnett

Director

905-528-7988 Ext. 2250
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Sarah Lintott

Office Administrator

905-528-7988 Ext. 2249
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