Many feelings and stresses can come up when your child is in the blood and marrow transplant (BMT)/cellular therapy (CT) unit. Along with dealing with your child’s transplant, you may have trouble dealing with a complex hospital system. The family support team can help you cope.
Bioethics consultant
What is bioethics?
Sometimes, people are not sure of the right thing to do, especially if they are faced with a complicated problem or situation with which they have no experience. They may face a problem with conflicting or unclear values, on a situation where there is little certainty about how to proceed. Bioethics seeks to provide clarity in these situations.
What is a bioethical issue?
A bioethical issue is a problem or situation that requires careful evaluation regarding the best, or most acceptable, action to take. This involves critical reflection and reasoning on the values underlying what should be done in the practice of health care.
Examples of bioethical issues:
- Parent: "I don't know if I am comfortable stopping the treatment we started for my child."
- 8-year-old patient with cancer: "Why won't anyone tell me what is wrong with me?"
- Parent: "My child has cancer. I do not want the team to use the word cancer in front of them."
Bioethics consultation service
The bioethics consultant service aims to support ethical practice and decision making in clinical care, research, education and hospital administration. Consultation includes seeking clarification about, requesting exploration of, and seeking guidance about an ethical issue.
Who can use the bioethics consultation service?
A request for individual or group consultation can be made to the bioethics department by:
- a patient, family members directly involved in the patient's care or a patient's legal guardian
- hospital staff
- students, trainees and volunteers
Who provides the bioethics consultation?
A bioethics consultant is a professional who has been educated and specially trained to identify and counsel people about ethical or moral issues associated with their health and health care. They may have a background in philosophy, law, theology, or one of the various health professions, with additional special training in bioethics. Bioethics consultants also work with members of the health-care team to resolve any issues with the family that may be interfering with delivery of care.
What does the bioethics consultation process involve?
Bioethics consultation may be a one-time conversation, or it may involve in-depth exploration and long-term strategy development to address the issue(s). The consultation begins with determining if an ethical or moral issue exists, and if a bioethics consultation is the right resource.
How can a bioethics consultant help you?
The bioethics consultant will help you think about the goals and hopes you have for your child, in terms of their quality of life, and get you to look at any decisions you need to make in the context of your own values. Considering all the details and all the options, as well as having an opportunity to express your emotions, will help in the decision-making process. A bioethics consultant does not provide you with the “right answer”, or tell you what to do, but may be able to help you with the process of thinking through a difficult decision.
Although open discussion with everyone involved is encouraged, confidential consultations are available.
How is a bioethics consultation requested?
If you are struggling with a difficult decision and need some support, ask your nurse or doctor to refer you to your hospital's bioethics consultation service. A bioethics consultant will do their best to meet your needs, whether that means just one meeting to discuss a particular issue, or several meetings.
Interpreter
The Interpreter Services Department is a free, on-site service that provides spoken and sign language interpretation services to patients and families with limited English proficiency, or those who are deaf, deafened or hard of hearing. The primary goal is the exchange of medical information through spoken or sign language interpretation to facilitate communication between health-care providers, patients and their families who do not share a common language. Speak with your child's nurse or doctor about requesting an interpreter.
Office of Patient and Family Experience
The Office of Patient and Family Experience helps you deal with questions or concerns you may have about the care your child is getting. This is a department you can turn to for information and help, especially when you do not know which person in the hospital you should be talking to about a particular problem.
Patient and family experience specialists help connect patients and families with hospital staff and services. They act as a bridge that brings people together to seek positive solutions. They can help:
- discuss issues in the BMT/CT unit or in any part of the hospital
- find the information or resources you need
- families and staff communicate better with each other
While your child is cared for in the BMT/CT unit, patient and family experience specialists are available to represent or respond to your family's needs or concerns.
Why does it help to talk to a patient and family experience specialist?
Having a child undergoing a BMT/CT and being at the hospital can be disruptive and stressful for families. It can be hard to seek help and ask questions.
Some people have health-care concerns they need to address, while others may have communication issues with the health-care team that are troubling them. Some patients and parents worry that they will break down and cry, or get very angry, when discussing issues that upset them. Most people do not want others to think they are being difficult. Families may worry as well that they will make things worse for their child or for themselves, if they express that they are concerned or dissatisfied.
Patient and family experience specialists understand these fears. Their goal is to support and help you. Because they do not make decisions about your child's treatment, they are in a good position to assess and respond to your concerns. The service is offered because responding to families' concerns is an important part of family-centred care.
What can the patient and family experience specialist do for you?
If you want to talk to a patient and family specialist about a specific concern, you can do so:
- in your child's room
- on the phone
- in the patient and family experience specialist's office
You can talk to the patient and family experience specialist during business hours while your child is receiving care in the BMT/CT unit, or after your child is discharged.
After talking with you, the patient and family experience specialist will recommend some actions that can be taken. For example, the patient and family experience specialist can:
- contact someone on your behalf
- go with you to meet with staff members to talk about your concerns
- work out a plan to help you take your concerns directly to a staff member
How do you contact a patient and family experience specialist?
You can ask a nurse to refer you to the Office of Patient and Family Experience, or you can simply call the hospital switchboard and ask to speak to someone in the Office of Patient and Family Experience.
Social worker
Social workers are integral members of the health-care team. Social workers are available to care for the social and emotional effects of the health condition and treatment of the patient and family. A social worker can offer a variety of supportive services, including individual, family, patient and family education; information regarding community resources; and referral to community-based services.
Social workers are professionally trained to help children and families who are dealing with difficult situations. As a member of your child’s health-care team, the social worker understands the impact a BMT/CT has on your child and family. Social workers are aware of the diverse backgrounds and unique needs of families who come to the hospital for medical care.
How can a social worker help you?
Social workers provide counselling and other services that you or your family may need when your child is coping with their BMT/CT. Some of the ways social workers can help include:
- supporting you during periods of crisis
- counselling parents and families
- providing support groups
- linking you to community resources when you need financial help or home support
- advocating for you in the hospital and in the community
When should you talk to a social worker?
You may be worried, or want to talk to someone, about:
- understanding a diagnosis
- your child's and family's adjustment to a BMT/CT
- feelings of loss or control
- your own health and self care issues
- periods of stress and how you can cope
- feelings of grief and loss
- parenting issues and concerns about your other children and their care
- family conflict that affects your ability to cope
- financial difficulties created by your child's illness or stay in the hospital
- concerns about communication with the health-care team
- follow-up support for your child and family at home
Who do social workers see?
Social workers are available to all families, regardless of your child’s condition. Do not hesitate to ask for social work services. Helping to ease your anxieties and finding solutions to problems will make you better able to be supportive and positive for your child and the rest of the family.
What happens when you see a social worker
Social workers are committed to providing strength-based, family-centred care. The social worker will want to understand the difficulties you face. They will do an assessment of your situation and explore your psychosocial needs. Together, you will identify the difficulties you are facing and develop a plan of care.
Social workers are available to see all family members if they also need support. The social worker may continue to provide counselling and support after your child is discharged from the hospital.
How do you contact a social worker?
You can request this service yourself. A member of your child’s health-care team may also suggest putting you in touch with a social worker, depending on your situation. Speak with your child’s nurse or doctor or contact your hospital’s social work department directly.
Spiritual and religious care
The members of the Spiritual & Religious Care department are part of the inter-professional care team. Functioning as inter-faith chaplains with specialized ceremonial skills in their respective faiths, they offer spiritual and religious care to patients, their families and staff. The main role of a clinical chaplain is to assist patients and their families to be at peace within the circumstances they find themselves in while in the hospital. The services of the Spiritual & Religious Care department include multi-faith requests for counselling, prayers, blessings, ceremonies, sacraments, consultation, mindfulness meditation and deep listening.