2017 needs assessmentSummary report
This needs assessment was conducted in early 2017 as part of a number of initiatives undertaken by the Pregnancy and Infant Loss Network (PAIL) under its new provincial mandate.
In late 2015, the Ontario government passed Bill 141, the Pregnancy and Infant Loss Awareness, Research and Care Act. Bill 141 made it mandatory for the Ontario government to fund research and expansion of programs for the more than 37,000 families impacted by pregnancy loss and infant death in Ontario each year. This bill also declared October 15 as Pregnancy and Infant Loss Awareness Day in Ontario. As a result of PAIL Network’s leadership on Bill 141 and strong reputation based on more than 20 years of experience in providing peer support to families and educating healthcare providers, PAIL Network was given a provincial mandate and funding to expand its services to increase access to PAIL Network’s support programs to bereaved families and update and expand education on pregnancy and infant loss.
One of the key deliverables and a foundational project for PAIL Network by the end of March 2017 was to conduct a province-wide assessment of: 1) the needs of families who have lost a pregnancy or an infant, and 2) the needs of healthcare providers who work with bereaved families. The main purpose of the needs assessment was to inform the development of a new three-year strategic plan for PAIL Network. Both projects were completed by the end of March 2017.
This report presents a summary of the consultations conducted as the provincial needs assessment for PAIL Network. Its contents directly informed the creation of a new strategic plan. This report also has been submitted to the Ministry of Health and Long Term Care to help inform the Ministry about the current state of supports for bereaved families and education of healthcare providers.
Finally, this report is being made publicly available on the PAIL Network website in the hopes that it will inform individuals and organizations across Ontario about how we all can provide better care and support for families when they experience the devastating loss of a pregnancy or infant.
Design of the consultations
The needs assessment was conducted via a series of in person and telephone focus groups to hear first-hand from families who had experienced a loss and healthcare providers. The focus groups lasted 1.5 hours for healthcare providers and two hours for families.
Each focus group started with a short overview of PAIL Network including its history and new provincial mandate to expand services for families across Ontario. It was explained that the feedback we received in these focus groups would directly inform the development of a new strategic plan for PAIL Network. All participants were informed that a summary report of the complete consultations would be submitted to the Ministry of Health and made available publicly on the PAIL Network’s website. Participants were assured that individual confidentiality would be maintained in the writing of the report and that no individual names or stories would be included in the report. Participants were invited to ask any questions before the focus group began.
Each family and care provider focus group was conducted by a facilitator using a pre-set number of open-ended questions to guide the discussions with each group.
The focus groups with families began with families telling their personal stories of loss. Some families had experienced more than one loss, and for some who attended, the loss had occurred years ago. After this opening discussion, the focus group proceeded to focus on four topics:
- What was positive or helpful in the care and support they received during their loss?
- What was not positive or helpful in your experience? What gaps exist in care and supports for families experiencing pregnancy or infant loss?
- What would you think about families receiving an automatic referral to PAIL Network if families give their consent at the time of their loss? What advice do you have for how this referral process could work?
- What do you think are the priorities for PAIL Network in the next three years? Where would you most want PAIL Network to focus its effort and resources?
The focus groups with healthcare providers began with them describing the services and supports currently available in this community for families who lose a pregnancy or infant. After this opening discussion, the focus group proceeded to focus on four topics (topics 1, 3 and 4 are the same as for families above):
- In your experience, how well do you think the needs of families are being met? What is working well? What is not?
- Work is underway to develop a standard of care for women who present to the Emergency Department with a loss or potential loss less than 20 weeks. What do you think about the plan to develop a standard of care? And what would you want it to address or include?
- What would you think about families receiving an automatic referral to PAIL Network if they give their consent at the time of their loss? What advice do you have for how this referral process could work?
- What do you think are the priorities for PAIL Network in the next three years? Where would you most want PAIL Network to focus its effort and resources?
Focus groups were held in 12 communities across Ontario from late January to early March 2017. In each community, we held a focus group with care providers in the afternoon and a focus group in the evening with families.
Focus groups were held in the following cities: London, Dryden, Sioux Lookout, Thunder Bay, Sault Ste. Marie, Huntsville, Barrie, Ottawa, Peterborough, Toronto (participants invited from across the GTA), Manitoulin Island, and Windsor.
In addition to the face-to-face sessions, we held three province-wide focus groups via teleconference. One session was for families and two sessions were for healthcare providers. In these sessions, participants called in from many different locations including the Kingston area, Hamilton, Guelph and Kenora.
We had a wide cross section of participants and experiences in the groups of families and the healthcare providers who attended the focus groups.
Care providers included: nurses (ER, labour/delivery), physicians (primary care, ER, OB), midwives, doulas, social workers, psychotherapists, funeral directors, spiritual care leaders, and others. They worked in a range of care settings including hospitals, public health, private practice, midwifery groups, pregnancy centres, and funeral homes.
The families we spoke with had experienced a wide range of loss experiences including first, second and third trimester loss, medical termination, stillbirth or loss of an infant up to a year old. The experiences they described occurred in a wide range of settings including hospital (ED and/or labour and delivery) doctor’s office, and at home.
Summary of what we heard
Overview of services currently available
- Depends on many factors including size of community, level of hospital care in community (i.e. if have level 3 etc.)
- Early Pregnancy Assessment Clinics are a positive addition to the hospital services available in some communities. Goal is to see patients with early pregnancy issues – bleeding, stable ectopic, miscarriage – away from the ER. Benefits of EPACs include consistent and specialized care, appropriate follow-up, separate room or space from busy emergency departments, accurate information and understanding of family needs. These clinics see patients up to 12 weeks, but there are still gaps for those presenting between 12 and 20 weeks. To be seen in the EPAC, patient first has to go to ER for blood work, so there is still the chance of long wait in the ER.
- Some hospitals have a perinatal bereavement committee. These committees recognize the serious health implications of perinatal loss and impact on the patient/family. Membership can include people from across the hospital, including spiritual care providers and people from other community organizations
- Wide variety of practices and procedures for care during or after a loss. Some hospitals have checklists, others depend on the individual care provider’s own skills and experience.
- Generally, loss under 12 to about 15 weeks is handled in ED or by a family doctor, sometimes a midwife or doula if the family was an existing client.
- Some communities run PAIL Network groups or peer support groups organized by individuals/organizations in the community.
- Second trimester loss often goes to labour and delivery/birthing unit for triage. Some units will take moms under 20 weeks (i.e. If need epidural and nurses are better able to handle care needed) and if a bed is available.
- Fertility clinics are another care provider for PAIL Network to consider in planning outreach and partnerships. While primary focus is fertility support, they also support families through loss of pregnancy, pre-implantation selection and genetic testing. These clinics provide D&Cs onsite, so they are missing the hospital as a potential connector to PAIL Network following a loss.
- There is wide variation of written materials for families across hospitals, if/when they are available.
- Private practice psychotherapy is available, but can be costly for families. Some families have access to an EAP program that provides funding for counselling, but there is a limit and counsellors often don’t have experience with bereavement, let alone perinatal bereavement.
- Some families mentioned receiving grief support from a funeral home. Some funeral homes provide funeral services to families who have experienced a pregnancy or infant at a reduced fee.
- Other bereavement support organizations provide perinatal bereavement support but not consistently across the province, or as soon after a loss as PAIL Network.
- Public Health/Healthy Babies Healthy Children (HBHC) program connects the mom of a healthy baby with public health for a home visit after discharge. Some public health units visit all families referred. Others, such as Toronto Public Health, visit only certain families based on need.
- In several communities there are peer and volunteer-led bereavement groups organized by a few bereaved parents. Some groups started in the past no longer exist. Doula-led bereavement groups exist in some communities. Group supports in small communities can pose challenges for confidentiality.
What's working for families
- There were many stories of outstanding care from a care provider, or support from a family member, friend or the community. Even when care at the time of loss was generally a positive experience, many families note that a lack of aftercare as a significant challenge.
- For indigenous families, traditional healing practices and support from elders, family and the community are important to a family’s healing. Care providers serving largely indigenous populations have traditional culture and language built into their care for families.
- Online support in many forms – chat lines, PAIL Network online resources and other bereavement organizations – used by many families as a source of information and support.
- Memory making provided at the hospital – memory stones, lock of hair, clothing, blanket, feet/hand molds, photographs, etc. Many families noted that having these after the loss was essential to
- Experienced care providers who support the family at the time of their loss and know what families need even when the family themselves may not (i.e. encouraging a family to hold/dress the baby, take pictures, etc. even if family is hesitant or unsure at the time).
- Consistency in the care provider so they know the situation, past experience and don’t require re-telling by the patient (i.e. same radiology technician at every visit, same nurse throughout inpatient stay, seeing the same nurse on follow-up or a subsequent pregnancy).
- Early Pregnancy Assessment Clinics, where they are available, provide very effective and highly valued specialized medical support and compassionate care.
What's working for care providers
- A few hospitals have care protocols, tools and practices designed to provide care for perinatal bereavement, such as: checklists, sign/sticker on door, practice of assigning the same nurse to the family,
- Many providers noted that care protocols exist for after 20 weeks and not pre-20 weeks.
- Nurses and other care providers who are experienced and comfortable with loss often mentor newer or younger colleagues. This is often the only “training” they will get.
What isn’t working/service & support gaps
What isn't working for families
- Emergency department (ED) experiences are generally very negative for families when experiencing a miscarriage or pregnancy loss.
- Loss occurs amongst other families and live babies. For example, in the ED with no private location, on LD floor amongst other babies. Some hospitals have special rooms or use a room out of the way to give family privacy.
- “Medicalization” of the bereavement experience – doctors quick to diagnose depression or anxiety without recognizing that this is a normal bereavement process after loss.
- Care providers don’t see the loss of a child and a family’s hopes and dreams that go along with expecting that child. This is especially true during early-term loss. Many care providers treat medical needs but not psycho-emotional aspects or see this as a normal part of the experience of loss. Stillbirth is more real to care providers; miscarriage is often unseen and not recognized. “First trimester losses are usually glossed over.”
- Families who travel to another city for specialized care are not connected to anything when they return to their home community. Need better communication back to their primary care provider, local public health and to family support resources in the local community.
- Lack of education and awareness about perinatal loss means that care providers often say inappropriate or insensitive comments to families. There were many, many examples in the consultations from families about comments made to them that discounted their loss, further added to their trauma, and have stayed with them.
- Families need to repeat their story over and over, which increases the loss experience. Providers need to read the chart and have a marker on the chart that identifies the patient as having had a loss. Even standard questions during ultrasound regarding number of pregnancies is traumatic for person/family who has experienced a loss.
- Some hospitals have practice of playing a song or chime over the PA system when a baby is born. It is very difficult for families experiencing a loss to hear this over and over (recommendation: hospitals to stop the practice or make it possible to turn off PA system in the room of the family).
- Gap in support for families through a subsequent pregnancy. Families often have to leave a support group when they are pregnant after their loss. This creates gaps both in supporting them with their loss and in the subsequent pregnancy.
- Families who experience additional trauma associated with their loss (e.g., child dies at home requiring the police and coroner involvement, or the decision to medically terminate the pregnancy or remove life support) have additional support needs to what is offered for perinatal bereavement.
- Recognition that loss of a pregnancy or infant can stay with a person/family for years and impacts them throughout their life and subsequent experiences.
- More support is needed that is geared towards fathers, partners, children and extended family members. Much of the available information focuses on the mother. Support for couples is also needed, as one partner often experiences grief differently than the other.
- Perinatal bereavement support and information for families that is tailored to different languages and cultural groups. Needs of diverse communities are increasing in recent years.
- Stigma surrounding perinatal loss means that the needs of families are not communicated or addressed, or the loss is minimized. Stigma also exists within the broad perinatal loss community, for example, stigma felt by families who chose medical termination, or the stigma felt by women who miscarry that their loss is not as significant as a woman who has stillborn or infant loss.
- Availability of culturally competent care is more limited than it should be. Hospitals should keep a list of cultural and spiritual care leaders who they can call to support a family experiencing loss and bereavement.
- Families who have an elective termination face the same challenges and issues and cannot be forgotten
What isn't working for care providers
- First trimester loss is not well handled in the emergency department (ED). It is not a medical emergency and is often not treated with sensitivity. There is no physical space for the patient and their family. Staff frequently are not equipped or trained to deal with psychological aspects of miscarriage. Care received is largely dependent on who treats them when they arrive in ED. For most hospitals there is not a formal standard of care to be followed.
- Families are not given the option for miscarriage at home versus in the hospital. If they do choose to go home, often they are not provided adequate information about what to expect and what to do.
- There is no consistency for the use of terms such as miscarriage (i.e. is it up to 12 weeks or up to 19 weeks?)
- Lack of consistent policies for treating second trimester loss. First trimester up to 12 weeks is usually managed in the ED or by a primary care practitioner with a referral to hospital if follow-up treatment needed (i.e. D&C). Over 20 weeks the person is usually referred to the unit but, different practices for 12 to about 20 weeks apply. Families want to have a choice and be informed of their options and what to expect once they have made a decision. Some hospitals will move family to birthing unit for better care if there is a bed available. Second trimester loss is a “grey area”; many people do not want to be on a labour and delivery floor with new mothers and crying babies.
- Care process checklists, where they exist, help providers to be confident they are providing the best care and to enable them to focus on the family.
- Care providers who are comfortable and experienced with pregnancy and infant loss take on more responsibility either because they are able to or because they feel families don’t get the same quality of care from colleagues. They become burned out and want more of their colleagues to be able to provide quality, compassionate care.
- Care providers themselves need support following a traumatic loss. Debriefs are helpful, but “care for the carers” also needs to be provided. Care providers have the medical knowledge but are not trained how to provide emotional support to a family and this adds to their own stress.
- Care providers often do not have anywhere to refer to a family when they leave their care. Many care providers commented on the stress they feel in sending a family back to the community with no support.
- In many instances, care programs in hospitals are the result of one or more care providers’ personal commitment to providing good perinatal loss and bereavement support in the hospital. Many stories of providers using their own money and time to make the program work. Programs are challenged to continue when that person moves on or retires.
- There is a shortage of counselling support for families in the hospital, and often none on weekends. Private counselling is too expensive for most people, and not everyone has access to an Employee Assistance Program. Further, not all counsellors can provide perinatal bereavement support which is very different than other losses.
- For many care providers, their experience of loss is infrequent and there are long gaps between receiving training and being presented with a family experiencing a loss. Quick refresher online seminars or tip sheets are needed to bring providers up to speed quickly when needed.
- Sometimes families are not ready to receive information about available supports at the time of their loss. Need to provide information the family can refer to later, and implement a process for follow-up where onus is not on the family.
- Use of medical terminology when speaking with families depersonalizes their experience and increases the trauma (e.g. “the products of conception” to a care provider is a child to the family)
- Stigma around palliative care prior to the actual loss. Families do not know what it is and don’t want to consider it before they actually need it.
- Lack of dedicated funding to purchase resources for bereavement. We heard stories of nurses buying a camera, paying for supplies, relying on volunteers or donations for things such as gowns for babies.
- Wait times for women needing a D&C. Some hospitals have dedicated GYN OR times each week, and can schedule D&C in so women do not need to wait.
- Options for women experiencing loss between 12 and 20 weeks. Some are offered medications to go home while others are not. Families not given choice or support when they do go home.
- Families want different methods of support. Some like in-person support, some prefer one-on-one to group support. Some want access to chats or information late at night. Families also want support tailored to their specific type of loss. Families also acknowledged that their needs and preferences for type of support can change over time as their bereavement journey continues.
- Turnover of care providers means that training is needed on an ongoing basis and through easily accessed modules. This is particularly the case for smaller and remote communities where turnover is higher.
- Disconnect between public health referral process for families who experience a loss. Automatic referral process for healthy baby to public health works well. When a family loses a pregnancy or infant, public health is not automatically notified or aware. There are differing practices across public health units in communities regarding whether or not there is follow-up with a family, and whether it is in their mandate to see a family if they have lost a baby.
- Lack of education for care providers about subsequent pregnancy and the challenges families face. Where there aren’t resources for specialized SPP programs, make training available to care providers on the basics and best practices.
- Lack of educational resources and training for staff to provide culturally competent care. Suggestion of online resources about different cultural practices and the needs of families in bereavement.
Consent-based automatic referral to PAIL Network
There was support amongst all care providers and families consulted for PAIL Network to establish a consent-based automatic referral process for families. They provided valuable advice and suggestions for the design and implementation of the automatic referral process, as outlined below.
Read feedback for the consent-based automatic referral to PAIL Network
- There were a number of suggestions on how the automatic referral process could follow and align with the existing automatic referral to Healthy Babies, Health Children (HBHC) for families with a healthy baby. The existing referral form to HBHC does not ask about death of a baby, but when this occurs it can be written in at the bottom of the form by the care provider. Although, even if the referral occurs, to qualify for a HBHC/Public Health visit the family must have a child under six. A family who has lost a baby and does not have a young child at home does not qualify.
- The HBHC in each community should also refer families to PAIL Network if they have experienced a loss and have not already been referred.
- Also enable community leaders and elders within Indigenous communities to make a referral or provide information to a family so they can self-refer to PAIL Network.
- The referral process needs to be integrated into the patient charting process and other care protocols at hospitals and physician offices.
- With an automatic referral, it is important that the subsequent supports provided by PAIL Network is flexible enough to match people in small or northern communities with trained supports who understand their environments. Supports do not necessarily need to be in the families’ home community but in a similar type of community.
- Families in small communities are often concerned about confidentiality, so they don’t access care or counselling within their communities. Having the opportunity to connect with someone outside their communities, should they prefer this, would be positive.
- The referral process also needs to capture women who miscarry at home and see their care provider weeks later.
- The referral process needs to address the needs of the many families who leave their communities for specialized care, experience their loss in the other city, and then return to their home communities. The specialized care provider needs to make the referral to PAIL Network, with care then being provided in the family’s home community.
- PAIL Network must ensure that if the referral is accepted, we follow through as it says. Do not leave the family wondering or without a call for longer than expected.
- The person who calls a family the first time needs to know enough about the family’s experience, so they don’t require the family to retell their story.
- For written information about referrals, keep to an appropriate reading level to ensure comprehension. Consider providing referral materials in multiple languages.
- Providers with experience doing follow-up calls after a family’s loss indicated that families don’t often answer the phone. Include on the consent form the option to communicate by email and request permission to leave a voicemail message if there’s no answer.
- Follow-up on an automatic referral could be challenging if family lives in remote or fly-in community, as there is limited access to phones and limited privacy. If unable to reach the family, have a way to connect with the local nursing station. Internet-based communication, such as Skype and Facebook, are key tools for communications in the north.
- Allow for various methods to follow-up with families after referral, not just telephone calls. Some families may not answer the phone, so email contact is better. Teenage parents may prefer contact by text. Also call in evenings and daytime as some people do not have “daytime minutes” on cell phones.
- It is important to give families the option to have PAIL Network call back later if they are not ready for support yet. The service must be flexible to the needs of the family and be available when the family is ready.
- Continue to accept self-referrals from families via telephone and the PAIL Network website.
Standard of care in the emergency department
There was unanimous support amongst everyone consulted that a standard of care and formal care pathway must be established for families who present to the emergency department (ED) with a possible pregnancy loss. Specific comments and suggestions were as follows:
Read comments & suggestions regarding ED standards of care
- “The ED is no place to lose a child. Many people have no choice but to go to the ED, so we need to make it a better place for families.”
- Standard of care is needed to provide better and more consistent care for women coming to the ED with an early loss. Care providers don’t often understand the significance of the loss. Generally the medical aspect of care is good, but psycho-emotional care is not.
- Any care standards or care pathways established must be based on evidence and best practices.
- Care pathways must be flexible enough to be adapted to local community needs and available resources.
- Care pathway should include a referral and/or communication back to the woman’s primary care provider. If they don’t have a primary care provider, they should be given a referral to one (i.e. nurse practitioner, family physician in hospital or community) for follow-up.
- Families need to be provided with consistent and complete information when they choose to leave the ED and have the loss at home. This includes: what they should expect, what is normal bleeding, when to return to the hospital, and what to do afterwards including when to see their primary care provider for follow-up.
- The standard of care should take into consideration the unique cultural needs of Indigenous communities and be adaptable at the local level in collaboration with local First Nations communities. Elders and local community leaders need to be consulted when implemented locally.
- The standard of care should include a standard for how families are informed about options for continuing the loss and what to do with the products of conception. There should be a culturally safe information included in the standard so that care providers and patients have accurate medical and legal information about what can and cannot be done.
- The standard of care should include women up to 20 weeks, not just 12 weeks, as there is a significant care gap and wide variation in care between 12 and 20 weeks.
Priorities for PAIL Network
Support for families
- Create more opportunities for families to come together to celebrate their lost children and share experiences with others who understand (e.g., family gatherings, weekend family retreat)
- Recognize and tailor support to many different types of families, not only the “nuclear” father/mother family.
- Offer specialized support groups for those families who have lost and will not have other children.
- Offer easily accessible information via the website and from care providers on:
- What to expect after the loss (i.e. physical and emotional changes)
- What families, friends can do to support their loved ones
- Live moderated chat for families tailored around specific types of loss or groups such as fathers, grandparents
- Education for providers about culturally appropriate care of Indigenous families.
- Provide peer support, online support and written materials to support fathers, partners and siblings and extended family members.
- Advocate for standards of care/improved care in radiology and diagnostic imaging and improve skills training in compassionate care for families experiencing a loss or subsequent pregnancy. Ultrasound and bloodwork are performed multiple times during pregnancy, more so when there is a problem or higher risk of a problem. Many families note poor or insensitive care by technicians and the lasting impact of these interactions.
- Training for care providers. This is the most important action to improve the care that families receive.
- Provide written materials in multiple languages.
- Develop culturally competent support for indigenous families in collaboration with indigenous care providers, community leaders and communities.
- Expand the capacity and content of the PAIL Network website to become a comprehensive portal for information, dialogue, and connection for families and for care providers, including:
- Evidence-based information for families and for care providers on a wide variety of topics
- Live online chats that are moderated by a PAIL volunteer
- Message boards to enable people to connect directly if they choose to
- Information available to the general public without having to log in, including how to support a family who have experienced a loss, how to access PAIL programs, and how to access other supports and services within specific communities.
- Continue to “normalize” pregnancy and infant loss by increasing public awareness and addressing the stigma that families face.
- Create “safe” spaces or events for families to get together, share experiences, remember their babies and support one another. Suggestions include a retreat weekend.
- Create a 24-hour telephone helpline for families who have experienced a loss to provide immediate support when needed.
Education for care providers
- Expand compassionate care education and training for healthcare providers
- Priority audiences are ED and primary care providers
- Early loss education (up to 20 weeks) is a priority
- Consider creating certifications for training completed
- Training for midwives is also important as they often provide aftercare.
- When scheduling webinars, consider holding them at the end of shifts.
- Provide funding or subsidies for the cost of training or travel to training sessions for those from remote areas. Provide funding to back-fill a position when someone is away on training.
- Provide funding for bereavement support supplies (hand/feet molds, camera film, cards, memory boxes, etc.) and/or arrange discounts from suppliers for group purchasing
- Make a hosted online support program for care providers, especially for traumatic unexpected losses.
- Information for families, so care providers can easily share information and know that families have what they need when they leave.
- List of resources available in the community to provide to families
- Provide ready-made advertising that can be used to promote a workshop in the community with other care providers.
- Increase awareness about PAIL Network and the services it offers for care providers and families.
- Make information on PAIL Network available in a wide range of locations including family physician offices, obstetrician offices, midwives offices, pregnancy clinics, hospitals, funeral homes, etc.
- Look into using the Ontario Telemedicine Network (OTN) as a platform for healthcare provider training. OTN is set up in locations all across the province and allows secure, real-time interaction.
- Advocate for linking perinatal loss and bereavement care training into professional education requirements and compulsory courses for physicians, such as emergency skills programs.
- Create a small care checklist or laminated desk reference tool for primary care providers to have in their offices as a quick reference. Include on these resources PAIL contact information.
- Provide a regular online forum for peer support and learning for healthcare providers.
- Include training in perinatal loss and bereavement in the standard curriculum for residents (ED, radiology, anaesthesia, OB/GYN, family practice etc.), nurses, nurse practitioners, midwives, doulas, ultrasound and lab technicians
- Provide easy access to information that providers can give to families about what to expect in the coming weeks and months, and where to go in their community for support.
- Offer training and education for care providers in multiple formats: lunch and learns, quick reference tip sheets for different types of loss, day-long training sessions, train the trainer approaches, YouTube videos, online short refreshers, etc.
- Education is needed to many different groups of care providers: family practice teams and family physicians; ED physicians, nurses and admin staff; radiologists and ultrasound technicians, lab technicians, hospital staff; clinical educators, first responders, victims services workers, etc.
- Find opportunities to provide training and education (compassionate care workshops) at professional practice conferences.
- Support the creation of local communities of practice around perinatal loss and bereavement care.
- Simple and clear tip sheets on what to say, what not to say to families.
- Resources and education on how to better support fathers, partners, children and extended family members.
- Education on providing care to indigenous families and specific cultural practices. Note that there are many different Indigenous communities, languages and cultures across Ontario so it’s important to dialogue with local Indigenous leaders when implementing in a community that serves Indigenous families.
- Provide hospitals with memory making supplies and bereavement packages that can be handed out to families.
- More PAIL pamphlets and booklets including new topics such as child/sibling bereavement, stages of grief brochure, what to expect and what to do in the first week/month/year following a loss, subsequent pregnancy, loss of a twin, and medical termination.
- Online resources for care providers about different cultural practices and beliefs of families in bereavement.
- Provide easy access to information that providers can give to families about what to expect in the coming weeks and months, and where to go in their community for support.
For the broader system of care
- Advocate for greater communications and coordination between hospitals/care providers and public health when a family experiences a loss. Also for the coordination and alignment of automatic referral processes to both Health Babies Healthy Children and PAIL Network.
- Strengthen or develop new partnerships with other organizations working towards common goals and pilot new initiatives of shared interest, including:
- Bereaved Families of Ontario at the provincial and local levels,
- Public Health units (Ontario Public Health Standards have increasing focus on Mental health – perinatal bereavement can be connected into this),
- Palliative and hospice care providers in local communities, including the Palliative Care Network in each LHIN,
- Victims services organizations in communities to provide training
- Do community outreach and public awareness campaign about perinatal loss and bereavement, including adding appropriate information into the high school life skills course curriculum.
- Address the stigma of perinatal loss and bereavement through public education and awareness.
- Advocate for expansion of compassionate bereavement education for all emergency department (ED) medical staff, development and implementation of a provincial standard of care for early loss care in the ED including requiring each hospital to establish an infant loss protocol based on best practices. Getting this right is a top priority for the everyone.
- Advocate to raise the profile of perinatal loss and bereavement as part of the province’s priority focus on mental health and well-being.
- Advocate to improve the rules for maternity leave benefits for women after experiencing pregnancy loss. Also advocating for compassionate care training for government staff who are on the front-lines interacting with families who have just experienced a loss.
- Advocate to improve the process for medical registration of infant loss including compassionate care for government staff and changing the process and documentation required to recognize the special circumstances surrounding the loss of a stillborn infant.
- Advocate for, and work in partnership with, public health units to visit a family that has experienced a loss and allow more than one visit if needed. Explore the idea of creating a peer bereavement support position within public health funded by PAIL Network, starting with a pilot in one local public health unit’s Health Babies, Health Children program.
- Support advocacy efforts of Ontario midwives to be funded to provide aftercare to women who experienced a loss.
- Advocate for improved information sharing regarding best care practices for families with a subsequent pregnancy after loss. Also advocating for the establishment of subsequent pregnancy programs in regions across Ontario in the longer-term.
- Advocate to include training in perinatal loss and bereavement in the standard curriculum for medical residents (ED, radiology, anaesthesia, OB/GYN, Family Practice etc.), nurses, nurse practitioners, midwives, doulas, ultrasound and lab technicians, first responders, etc.
- Advocate for the expansion of Early Pregnancy Assessment Clinics to multiple locations across Ontario.
- Advocate to have perinatal bereavement included as a focus of the future provincial funding of psychotherapy services announced by the Minister of Health.
Report prepared by Catherine Anastasia