Children, adolescents and a national approach to end-of-life care...

With respect to the implentation of a pan-Canadian approach to palliative care - that includes the four key components that have been elaborated on here - I feel we must ensure that certain populations that have their own unique needs and concerns be able to have those needs met in a unique manner.

I feel that it is critical as we continue to research end-of-life care and develop policies that we do so in a way does not just address the needs of the majority but that also addresses the needs of those whose end-of-life experience is not as well understood.

Children are one such group that has their own unique challenges when it comes to end-of-life care.

Stats Canada (1997) reported that over 6000 children, ages ifancy to 19 years of age die each year in Canada.

The prevalence of life threatening illnesses within Canada are as follows:
10 per 10 000 children aged 0-19 years.

In a health district of 250 000 people, with a child population of about 50 000 in one year:
5 children are likely to die from al ife threatening illness -
cancer (2)
heart disease (1)
other (2)

50 children are liely to have a life treatening illness, about half of whom will need palliative care at any time.

A number of different organizations are responsible for starting and advancing the field of pedatric hospice palliative care. These include the Children's International Palliative Projects and Services (ChIPPS), Canadian Hospice Palliative Care Association Pediatric Special Interest Group (PSIG)/Canadian Network of Palliative Care for Children (CNPCC).

The goal of these groups is to help guide health care professionals in establishing relevant standards of practice, service delivery and policies that will advance the field and ensure that children and families are able to receive optimal care. It is our belief that all the policies and principles that afforded to adults requiring palliative care should also be applied to children and adolescents who require end-of-life care. This includes applying the 4 key components to the process of care.

Children, adolescents and their families are unique and require specialized that is based on the best principles of adult palliative care but that recognizes that they require a specialized and family centred approach. The following are some of the unique needs and issues surrounding children and pedatric palliative care (this list is by no means exhaustive):

• Children are not small adults and therefore their emotional, physcial and developmental issues and needs are unique and they respond uniquely to therapies and drugs.Childhood diseases are often unpredictable in terms of prognosis and duration or trajectory of illness requiring years of caregiving by families and often the loss of income and social supports.
• Families with children who have life threatening illnesses tend to be younger and have fewer available resources.
• Children are not as likely or able to advocate for themselves and therefore rely on family members to make decisions for them at a time when adults are highly stressed and grieving the loss of the child's health.
• Children communicate differently and their understanding of illness, death and dying is developmentally dependent.
• Children's experience and expression of pain is different than adults and requires different and idnvidualized treatment.
• Children experience unique symptoms such as fatique, nausea and vomiting, shortness of breath which are not well understood or treated in children.
• The grief associated with the death of a child is known to have more devastating and long-term implications for the entire family.

These and other considerations (e.g. bioethical considerations) need to be addressed as we begin to develop and implement a national best practices approach to end-of-life care.

Compassionate Leave of Absence... isn't all that compassionate

A quick note on compassionate leave of absence- as it has not yet been elaborated on and warrants social critique. This is a tax route policy that was first introduced in 2004 . Generally it was enacted to provide employees, facing the death of a loved one, the ability to leave from their job with benefits protected for up to six weeks. Six weeks is allotted for individuals to care for loved ones until death, arrange funeral processions and bereave this loss- which seems like a short period of time in which to do all of this. However, that aside, there are inherent restrictions in the eligibility process to gain access to this service.

How to Qualify for compassionate leave of absence?
- The employee must be employed for a company that is covered by Employment insurance
- They must have at least 600 hours of earnings.
- They must obtain a certificate from the physician stating the individuals needing care is at risk of death- within 26 weeks of death to be exact.
- Must be a direct family member.

This seems like a lengthy and trialing procedure to have to go through on top of the toils and demands of caring for the dying- in fact, the restrictions are so tight that only 5-6% of those who would qualify for this service actually use it. It is systematically inaccessible and unrealistic to expect individuals to go through this rigorous process while going through such a vulnerable time of life. Also, it is highly discriminatory to caregivers who are not direct family members of the dying individual. Furthermore, physician are often reluctant to say- and caregivers to hear, that someone’s death is immediately inevitable- also this is not always clear whether death is a risk. Therefore, this policy- in theory is compassionate but in practice it is far from it and begs to be reassessed.

Final Implementation blog:

Care Setting

"That I may die in the arms of my lover, surrounded by those who matter and in the sanctitude of my home . . ." (BF)

Is this not what many of us would wish for? Yes, probably, but it may not always be possible. When asked, almost 75% of Canadians would rather die at home than institutionally, but in reality, only about 25% of us actually do live out our wishes.

With proper EOL care for those who know they are at the end of life, dying at home should be a real possibility. And, it shouldn't be at the expense of the health and financial stability of their family and friends. In a compassionate society, who cares about its' citizens, we must strive harder to ensure that the setting of care at EOL is not stipulated by resources or by government (of any level), but rather it is decided by the choice of those dying and their family. Death in a hospital is not a bad thing if it is one's choice, but if it is not their choice, it is not the best thing. The resources must be in place to allow for this choice - home-based EOL care is only one alternative in an array of possibilities. Hospitals need to offer a specialized area for palliative care; hospices can be a wonderful alternative to death in the home; long-term facilities should be allocated (and funded for) beds for palliative care purposes, rather than the haphazard way it is offered now in these institutions where the patient often must leave their 'home' (particular floor of a LTC facility, or wing or ward) in order to receive the privacy required for dignity in death - they have earned the right.

The continuum of care from cure to comfort, from living to dying, from birth to death - it is the model of care that honours the human side of us all. It speaks to respect, dignity and compassion. It is our duty to provide it.

A Broad Range of Services for End-of-Life Care

What does this mean? In our view, it means offering services that care for more than the physical illness that is causing the death. It is offering care for all aspects of the human being, and not just those needs of the dying, but also care for the needs of their families.

Basic services may be offered by those outside of the specialized area of EOL care whereas advanced services are those provided only by those with specialization in EOL care. These services include but are not limited to:

• Care Co-ordinator
• Formal homecare services and equipment.
• Assistance with Activities of Daily Living (ADL) where necessary.
• Appropriate pharmaceutical management, including timely assessment of pain and other symptoms.
• Sufficient financial support to both the patient and those family members providing care
• Availability of respite care when needed. This care should be available on an emergency or a planned basis. It should be time limited.
• Day support programs when the patient is able.
• Spiritual care via pastoral services where appropriate or other spiritual advisor or helper.
• Attendance to psychosocial needs of the patient and their family - counselling services when needed; timely and accurate information communicated to family, regarding the health status of their loved one; help to ensure, that as informal caregivers, they are doing the best job possible and acknowledgement for their contribution; cultural needs etc.
• Bereavement help for grieving family members - follow-up care.
• Available EOL specialist support on an emergency consultation basis.
• Information service - 24/7
• Alternative/Complementary services such as Rieki, massage therapy, touch therapy, homeopathic care, and any other service indicated and legitimatelyrequested with regard to age, gender, ethnicity, sexuality, etc.

This continuum of basic and advance care services will require a committment of federal dollars as well as a local committment to providing appropriate, compassionate EOL care. It is our duty to provide what is necessary for this care model to succeed.

More on Implementation . . .

Care Co-ordinator

Help me through the night . . .

It is imperative that each specific locality, urban or rural, have access to a full-time co-ordinator who is skilled in EOL/Palliative/Hospice care. It is not necessary that this person have a nursing background, although it would be helpful, especially in a rural or remote setting.

This position will have access to or ability to:

1. Assessment tools required for determining the EOL care needed on an individual basis.
2. Plan and implement EOL services.
3. Evaluate the services and care outcomes.
4. Be available to those patients who are near the end of their life and their family.
5. Work within an interdisciplinary team of professionals dedicated to EOL care.

This position should be paid via salary versus hourly or contractual work aggreement to enable a more consistent, invested role.

It is important for those facing the end of their life, these vulnerable people, to have access to a consistent resource, providing a much needed means of communication. This relationship cannot be underestimated. It is our hope, that this person will provide the link between acute care for cure and comfort care for dying - a broad area on the continuum of care.

Taken in part from Integration of end of Life Care: A Health Canada Synthesis of Research Results.

Measuring Success:

.....After implicating our social policy - we will evaluate its efficacy by the following measures.
The evaluation will occur 6 months subsequent to its enactment

- Decrease in the use of respite: by 10%. Reflecting that caregivers are more able to manage without the need for relief.

-Will evaluate the demographic of those using palliative care to see if it reflects more accurately the dying population. We aim for an increase of 20% of individuals over 65 -At the present time they represent 5% of the population using palliative care, however research has shown that 75% of deaths occur for those over 65.

-Will evaluate the turn over rate of health care service workers- and aim for a 10% decrease. (nurses, social workers, palliative care workers etc) - job turn-over rate reflects job satisfaction.

- We will randomly distribute a quantitative survey to informal caregivers to assess the level of satisfaction with end-of- life care services and accessibility. This will be distributed before the policy enactment and 6 months later to determine a increase or decrease in satisfaction rate.

- Lastly, we will research the number of elders dying at home, since the policy is in place to support the desire of more elderly to dye at home. We will aim for a 10% increase.

How to Implement End-of-Life Care Policy

Universality Component

Quality End-of-Life Care:

The Right of Every Canadian

1. All levels of government must be on board with the philosophy of end-of-life care. The Federal, Provincial and the Territorial governments must be at the table.
2. Intersectorial planning will make certain that a consistant array of services are available across the nation.
3. Sustained federal funding for accredited programs and services related to EOL care. A coommittment from the provincial and territorial governments to honour the dispersal of allocated funds.
4. A bigger committment to federal and provincial research outside of the Canadian Cancer Research Institute. This institution does a fabulous job, but people die from diseases other than cancer every day.
5. A toll-free 24/7 telephone service and a website be made available across the country. Accessible information on EOL care is absolutely necessary for patients and their families, at the time that they require it. Included in this information network, will be access to the care-co-ordinator in the local area.
6. Advertising the changes in policy - including changes to resources, information access, services and programs available etc. - will be necessary.

Our next blog will cover the implentation of the Care Co-ordinator Component.