Providing high-quality palliative care demands a lot from health practitioners. While it’s true that care should always be patient-centred, these words take on greater significance during the final stage of life.
For health care providers, sensitivity and compassion are key. Palliative patients often have unique pain-related issues, as well as pressing psychological and spiritual needs.
Those involved in providing care must take these needs into consideration.
Care coordinators are critical to the palliative care delivery process. You’re responsible for understanding the patient—the specifics of her condition, her subjective experiences, and her care preferences. Armed with this information, you ensure that team members are working together toward the right outcomes.
Of course, this job is far from easy. Coordination duties are always challenging, especially in cases when there are many care team members involved. But there are added responsibilities involved when your end goal is making life as easy and comfortable as possible for palliative care patients.
In this post we’ll delve into the immense value that care coordinators can provide for palliative care patients. We’ll also look at some of the major challenges involved, and consider how they might be overcome.
The Changing Palliative Care Climate
Across the globe, the need for palliative care is growing. As populations age and chronic disease rates increase, a growing number of patients are facing the last stage of life. Unfortunately, most health care systems aren’t prepared to provide comprehensive, patient-centred care for everyone who needs it.
There’s no doubt that Canada fits into this category. The Economist Intelligence Unit ranks Canada 18th out of 80 countries in terms of the quality of palliative care we provide. Both Mongolia and Panama rank better.
A recent article in the Canadian Medical Association Journal elaborates on these results. According to one of the article’s coauthors, a positive shift is possible. Dr. Graeme Rocker suggests that “it wouldn’t take a seismic change” to improve palliative care. But it would require action from policymakers.
One of the article’s recommendations states that all doctors should receive training related to end-of-life care. Unsurprisingly, another suggestion is improved access to services for patients inside their homes and in the community.
Nationally, there’s a need for far more hospices and palliative care facilities. This lack of resources—along with limited knowledge of options on the part of many physicians—means patients often wind up facing the end of their lives in acute care.
In many cases, dying at home is a better option. It’s also the preference of most Canadians. While this outcome isn’t always possible, one thing is certain: there should be better options for patients in the last stage of life.
There’s also a real need for health care professionals who are able to assess where and how people should receive their end-of-life care.
But who has the compassion and communication skills to ensure that these assessments remain patient-centred? Who’s able to organize the actions of practitioners so that they contribute to patient quality of life?
Care Coordinators: Making a Difference
It would be an understatement to say that the last phase of life can be difficult. Psychologically, patients and their loved ones go through a lot.
Between 15 and 20% of terminally-ill patients are diagnosed with major depression. And in terminal cancer patients, depression prevalence may be 4 times higher than it is in the general population.
Of course, even those who don’t meet the official criteria for clinical depression will often experience significant distress. Focusing on important relationships and spirituality can help.
Needless to say, the last things palliative patients and their family members want to deal with is the logistics of care. For health care professionals, the goal should be to make things as easy as possible.
That said, it’s a fine line. On one hand, health care professionals want to reduce patient anxiety—anxiety that’s often associated with decision making. On the other, it’s important to maintain the same patient-centred attitude in palliative care as you would in any health care field.
This is where careful care coordination becomes essential. As a coordinator, you look at the big picture. Your focus is the patient, and you know how to get necessary information from her in a way that’s both sensitive and respectful. You’re also able to see many other relevant perspectives at once.
There’s the nurse who needs to know about ongoing health developments. The pain management specialist who needs to be aware of all relevant test results, as well as subjective experiences of pain. Family caregivers, who may wrestle with their emotions and the risk of burnout.
And of course, there’s the palliative care patient. She needs respect, compassion, and the tools to achieve a sense of peace.
as a care coordinator, you have the people skills to organize care in a way that’s truly beneficial for patients. But with this responsibility come many pressing challenges.
Challenges to overcome
Care coordinators are well positioned to help palliative care recipients. With the right knowledge and the will to to improve patient quality of life, you can make a real difference.
That said, coordinating end-of-life care isn’t easy. There are a number of unique challenges involved, and dealing with them appropriately requires a great deal of sensitivity.
One of the hardest things a care coordinator has to do is tell a patient something she doesn’t want to hear. In some cases, unwelcome news relates to care settings. Studies show that, among those who have a preference, 75% of Canadians would like to die at home. Sadly, health care professionals can’t always make this a reality.
How do you inform a patient that it’s in her best interest to be transferred to a more traditional care environment?
Care coordinators may face resistance during attempts to to assess the needs of care recipients. Very low activity levels may signal that it’s time for a patient to move out of her home. So there may be times when you encounter dishonesty when it comes to these metrics.
In other cases, it may be that the patient you’re helping isn’t set up to receive palliative care at home. When round-the-clock care is required, there needs to be a support system in place in the community.
These problems go far beyond the relationship between a patient and her care coordinator. They make the entire coordination process more difficult. Without a patient’s full cooperation, it becomes harder to move forward. For every practitioner on the team, care gets held up.
And when it comes to care teams, there’s another ongoing challenge. When should you bring on someone new? Is it time for the patient to see a pain management specialist? Will a wound care nurse be needed in the weeks ahead? Scheduling nurses and personal support workers is also critical.
These questions impact quality of life. As a result, they’re important anytime you’re helping a patient. But like so many others, they take on new significance during the final stage of life.
Balancing act
If you’re a care coordinator, you’re used to acting as a facilitator. Far from focusing on a few specific tasks, you look at the big picture: the patient’s life. The work you do is especially significant at a time when recipients are typically trying to find comfort and a sense of peace.
While coordination during this stage comes with challenges, there’s a lot that care coordinators can do to reduce their impacts. Start by reminding yourself of your responsibilities and the real reason you’re fulfilling them.
How will closing gaps in care make life better for the patient? Will it reduce his anxiety? Will it free up more time for him to be with family? By providing truly patient-centred palliative care, you’ll be doing everything you can to help those near the end of life.
Feature image courtesy of Paul Taylor
