End of Life: What Family Caregivers Can Do to Elevate Patient-Centered Care
Few things mean more to many of us than having our loved ones around us when we die. In many cases, that means family members who are also our caregivers.
Dying can be extremely stressful and deeply saddening, especially if you are providing palliative care at home to a loved one.
A lack of a support network makes the experience even more challenging, increases grief and prolongs recovery from grief.
However, taking a patient-centered approach benefits family caregivers and can make your loved one more comfortable and at peace in their final days.
What Is Patient-centered Care?
There are several definitions of patient-centered care, all with the goal of creating a system of values, processes and approaches to improve the quality of care for patients.
The Institute for Healthcare Improvement defines patient-centered care as, “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”
According to Alberta Health Services, patient and family-centered care means:
- “• Patients and families are full partners in care
- A supportive and respectful environment for patients, families and providers to promote wellness and teamwork,
- Community of mutual respect
- Supportive relationships with businesses, organizations and associations who enhance the wellbeing of patients, families, staff, physicians, and the community.”
Respect, support, values and inclusion of patients and their families weigh heavily in patient-centered care. They take on even greater significance when families are coping with the impending loss of a loved one.
Because everyone’s end-of-life journey is deeply personal and unique, both the person dying and their families often grapple with how best to make it through the journey.
Beyond the physical decline, the patient and the family can experience a range of emotions, including fear, sadness, grief, regret, anxiety and even anger.
Some caregivers, especially spouses or partners, can also lose their sense of who they are, a sense of purpose and a will to go on.
While as a society we are becoming better at discussing death, we still do not have a roadmap to help us cope with it.
Patient-centred care is a key part of helping family caregivers and patients navigate some of that road to the end.
Potential Barriers to Patient-centered Care
- Not enough assistance for primary family caregivers. This increases stress, burnout and the risk of elder abuse.
- In some cases, patient-centered care can be undermined by a reluctance to ask questions. You or the person you are caring for might feel intimidated or that you’ll look silly if you do. But being able to understand information and follow instructions is vital to your loved one’s care.
- A lack of time and money. End-of-life care can be very time-consuming and costly. This can significantly reduce the level of care your loved one needs in their final days.
- Family disagreements. Squabbling between family members over decisions to be made for their loved one’s care takes the focus away from the patient and also creates an atmosphere that is not conducive to a peaceful passing.
- Health professionals who are not compassionate or responsive to the patient, the caregiver and other family members.
- Health professionals pushing unnecessary procedures or treatments when they won’t make much of a difference at this stage of life.
- Workplaces and other organizations — such as schools or universities — that do not provide family caregivers with support in general or during the end-of-life stage.
- Essential information from trusted sources when it is most needed.
5 Ways Family Caregivers Can Elevate Patient-Centered Care
When you are not healthy yourself, you are less capable of providing the best care possible for your loved one at this critical stage.
In a survey conducted by Team CarePal, caregivers revealed that fatigue, distress, burnout, worry, emotional pain, and exhaustion were their biggest hurdles in the palliative care journey.
All of these emotional challenges can impair your caregiving ability — including how you make decisions — on a daily basis.
Also, feeling overwhelmed, worried, or exhausted can lead to a breakdown of communication with health professionals who are caring for your loved one.
It’s not unusual that when someone is dying, they are less communicative with medical staff. At these times, a healthy, engaged family caregiver can help to make the situation better, including conveying your loved one’s wishes and helping to explain medical treatments.
Stress management can include taking frequent breaks from caregiving, practicing relaxation techniques, speaking to your manager and colleagues, and creating a strong, supportive network.
2. Build Relationships with Health and Care Professionals
Poor communication between caregivers and patients doesn’t just reduce the quality of patient care, it can contribute to fatal mistakes.
It’s much easier to communicate with a person you have already established a relationship with, especially when speaking about such emotion-charged issues as end-of-life care.
Maintain regular contact with primary care professionals, and palliative and hospice staff. Or call, email or ask for virtual consultations. Share information you think they should have, and address concerns your loved one has with any of their care team with the member in question or their supervisor.
Also, make sure they have several different ways to contact you. If you are going to be unavailable and someone will be filling in for you, give the staff their contact information.
3. Plan Ahead As Much as Possible
Consider this. In U.S.A. a rapid response team, or RRT, is a group of hospital professionals who respond to patients experiencing early signs of deterioration on non-intensive care units. Their goal is to prevent respiratory or cardiac arrest.
In a study published in the journal Nursing, 24 to 33 percent of all Rapid Response Team activations involved making end-of-life decisions.
In some cases, neither the patient nor the family had decided how the final moments would be managed. A lack of preparedness makes this natural transition more confusing and painful for the patient and family, but also more challenging for the medical staff.
Also, you should consider that in some cases, RRT members are not qualified to speak to patients about these decisions.
Families often feel left out of any choice over where and how the person they are caring for will die. So, make sure you know your loved one’s wishes and convey it to their care team as soon as possible.
Advance Care Planning is about documenting your wishes and having conversations with family, friends and the person who is going to speak for you if you are unable to speak for yourself. Make sure the plan is clearly understood.
It can be the difference between a more peaceful passing for your loved one and anguish all around.
Advanced Care Planning Canada has an online interactive workbook that will guide you through the steps of creating your individualized care plan. You can download it and share your plan with others.
4. Help Patients Break Down Bureaucracy
In a poll conducted by Ipsos for Montreal Economic Institute, 71 percent of Canadians revealed that they find the healthcare system too bureaucratic to respond to people’s needs.
As part of the planning stage, ensure that you are removing as many roadblocks to accessing necessary care as you can.
At the end of life, your loved one will likely not be physically, emotionally, or mentally able to do it for themselves. Don’t wait until it’s too late.
5. Seriously Consider Hospice Care
According to a study published in Behavioural Science (Basel), the quality of the end of life for people who enter hospice care is frequently much better. They experience less pain and suffering while having a supportive network and guidance families.
While you might be reluctant to put the person you are caring for in hospice care, you should investigate it carefully and with an open mind to determine if it’s the right thing to do. If it’s still possible, include your loved one in the decision.
What Health Professionals Can Do to Help Caregivers and Elevate Patient-centered Care
- Support or spearhead initiatives to redesign end-of-life care in your institution and the wider community.
- Be proactive in speaking to family members and speak in plain language as much as possible. Take the time to explain complicated procedures or treatments.
- Ask the patient and family members if they have understood what you have said and what to expect.
- Encourage questions from family members and give complete answers. This helps families to feel included, respected and valued, which also benefits a patient’s emotional and mental wellness.
- Listen to concerns that they bring up and address each one as patiently as possible. Be straightforward. Research shows families value honesty and clarity.
- Be proactive in guiding family caregivers to recognize early signs of deterioration and in how they should respond.
- Provide hope. It can be as simple as medical staff assuring caregivers and other family members that they will do everything they can to make their loved one as comfortable until the end.
- Respect their decisions to refuse care or to try unconventional approaches.
- Be respectful of cultural and religious practices and approaches to dying.
- Support initiatives to create dedicated spaces for caregivers and families inside hospitals.
Sources:
Nursing: Rapid response teams. What’s the latest?https://journals.lww.com/nursing/Fulltext/2017/12000/Rapid_response_teams__What_s_the_latest_.11.aspx
Behavioural Sciences (Basel): Family Communication at the End of Life https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5618053/
IPSOS: Canadians Largely Satisfied with Healthcare System, But Eager for Increased Access https://www.ipsos.com/en-ca/news-polls/canadians-largely-satisfied-healthcare-system-eager-increased-access
