Those suffering from chronic illnesses can still maintain their quality of life at any age and at any stage of a serious illness.
Many people ask how I handle doing my job every day. As a palliative care physician, I work with patients who are close to death due to a chronic illness, frequently when treatment is not working. When I sit down with patients and their families they are going through a wide range of emotions, whether it’s frustration, sadness or anger, and on top of that, we discuss sensitive topics.
It may sound surprising, but it’s an honour and a privilege to work in palliative care. I chose this specialty because the ability to help patients feel comfortable in their last days and provide support to their loved ones is one of the most fulfilling contributions I can make to enrich their lives.
Families don’t like to see an illness cause pain or discomfort to their loved ones. They are frequently overwhelmed with what can be done to lessen the pain and don’t always know how to get help. Many people at the end of their lives require around-the-clock care, and families frequently come to me filled with stress and need help coping. This is where palliative care comes in.
I work with patients and their loved ones to establish trust and open communication. This is essential to helping the health-care team figure out the best way to support them. Patients and their loved ones are wrestling with big decisions and it’s not uncommon for someone to have a sudden change of heart about their wishes for future health and personal care. The only way our team can help is if we know about it.
Unfortunately, many patients and their loved ones are missing out on the benefits of palliative care. It’s common to see palliative care as a last resort. In reality, research has shown it offers the most benefit when started soon after the diagnosis of a life-threatening illness and alongside medical treatment.
Recently, the American Heart Association and the American College of Cardiology Foundation revised their guidelines recommending doctors integrate palliative care with treatment for advanced or life-threatening illnesses, such as congestive heart failure or chronic respiratory conditions.
More physicians have started offering this type of care earlier to patients with serious health conditions, but sometimes doctors feel uncomfortable mentioning it. If you or a loved one have a life-threatening illness and have not been advised about palliative care, don’t be afraid to start the conversation with your health-care team. They will likely be relieved you brought it up.
A palliative care specialist may be brought on to assist. In smaller communities, family physicians who provide palliative care typically step into this role. No matter who is responsible, the first step is to communicate the patient’s wishes for future health care (also known as advanced care planning). This is never an easy discussion, but the Advance Care Plan influences the next steps.
Resources such as the Speak Up Ontario campaign by Hospice Palliative Care Ontario or seminars offered by local organizations such as the Alzheimer Society of Ontario, can offer advice to patients and their families on how to create an Advance Care Plan.
Patients or families can expect a palliative care specialist to review: the role of palliative care, illness trajectory and potential complications, medication options, living arrangements, caregiver and spiritual support and other interventions.
Depending on the patient’s condition, they may receive palliative care at home, in a hospice or at a hospital. Home is the first choice for many and depending on the location, a doctor may be available to provide monitoring through regular house calls. If this is something you or your loved one is considering, ask your family physician if they or a palliative care physician is available to make home visits.
Sometimes a caregiver needs extra personal support, specific equipment or supplies at home. Family doctors can help set this up through the local Community Care Access Centre.
For those living in smaller communities, if a patient’s needs go beyond their family doctor’s knowledge, they can ask for help from a palliative care specialist using a service called telemedicine. (They may need to go to a video conferencing centre to access this service.)
When using telemedicine, patients should connect with their family doctor since they will be following up on any recommendations. Family members should also feel comfortable requesting a consult whenever issues arise. Pain and symptom management happens frequently and the patient or their caregivers can offer the most insight when the recommended treatment isn’t helping.
The demand for palliative care continues to grow as baby boomers age. It has been shown to not only benefit patients but caregivers as well, by lessening their stress and helping with grief and mourning. Even when patients are suffering from chronic illnesses they can still maintain their quality of life at any age and at any stage of a serious illness.
More needs to be done to ensure all Canadians have access to this type of care.
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