Embracing Palliative Care: Easing Cancer’s Journey
As a mental health counselor working with mesothelioma patients and their families, I’ve had many conversations about palliative care and hospice care with my clients. I find many cancer patients have limited knowledge about these types of care. Understandably, we never want to imagine ourselves or our loved ones being so sick that we need to learn about pain management and end-of-life care, so it’s natural to push those thoughts aside and avoid the topic.
A recent journal article reported that despite the inclusion of mental health providers and chaplains in palliative care teams, anxiety still tends to be high with patients and families. The study mentions some methodological issues that could contribute to this finding. However, in my work with hospice patients and many years of collaborating with my colleagues in hospice care, there are other considerations that may also lead to the finding that anxiety and psychological distress is not well managed.
What Is Palliative Care?
Palliative care is an umbrella term for multidisciplinary treatment that focuses on mesothelioma symptom management and maximizing quality of life. Common mesothelioma symptoms that patients experience that can be managed with palliative care are pain, nausea, fatigue, insomnia and anxiety. Palliative care is often combined with treatments such as surgery, radiation, chemotherapy and immunotherapy.
Some hospitals or cancer centers have designated palliative care teams in the outpatient or inpatient setting. These teams can include palliative care physicians, nurses, social workers and mental health professionals, chaplains and other ancillary staff as appropriate. Palliative care teams may work in collaboration with oncology teams to help the patient feel as well as possible.
If a patient’s mesothelioma progresses, the patient and their family may choose palliative treatment within hospice care. Often people prefer home-based hospice care.
Hospice care teams are required to include a physician, nurse, social worker or mental health professional and a chaplain. Doctors and nurses address the physical care and medical issues. Social workers, mental health professionals and chaplains address the emotional and spiritual needs of hospice patients and their caregivers.
The fact that hospice teams are required to include mental health and spiritual care highlights the importance of addressing emotional and spiritual challenges families and mesothelioma patients face in end-of-life care. Anticipatory grief, anxiety, sadness and insomnia are quite common and can negatively impact the patient’s pain levels and overall quality of life.
Resistance to Palliative or Hospice Care
Sometimes oncologists are reluctant to bring up the topic of palliative care or hospice care. Many studies show that some physicians delay making hospice referrals. Some patients become upset when physicians bring up hospice care and ask to continue with more aggressive treatments.
It can be difficult for some mesothelioma patients or family members to transition to a model of care that isn’t focused on improving a patient’s prognosis. However, thanks to hospice services, many patients can outlive their initial life expectancy for mesothelioma cancer.
Leaving the comfort and familiarity of their treatment team is another reason that some patients resist a hospice referral. Mesothelioma patients and family members may feel pressured to think positively and consider choosing hospice negative thinking. This doesn’t allow for important conversations between the patient, family and the treatment team about effective ways to make the patient more comfortable
Reluctance to talk about end-of-life care does contribute to fear and anxiety at this stage of mesothelioma. Avoidance can lead to fear of the unknown for both the patient and the family members. Being familiar with available support and speaking with home health and hospice experts can do a lot to reduce that anxiety.
Sadly, delaying palliative and hospice services often results in crisis situations such as extreme pain or being bedridden. It then becomes a challenge to quickly get the patient and caregiver necessary supplies, equipment and support for providing physical care at home. Delayed referrals can be very stressful for everyone and don’t allow the hospice team to operate at their full capability.
Minimizing Emotional and Spiritual Stress
It can be helpful to have a proactive conversation with your oncologist that you’re open to palliative care and hospice discussions. When the patient and their family caregivers are open to discussing their wishes and all of the emotions that go with this experience, they usually feel less anxious and fearful in this stage of mesothelioma care.
Even when patients are receiving hospice care, there can still be some reluctance to accept care from their counselor or chaplain. Some people decline mental health and spiritual support. When important discussions about common emotional and spiritual challenges at the end-of-life are not occurring, it contributes to further emotional distress. Being open to mental and spiritual conversations in the beginning will make it easier to reach out to them when you may need their support and expertise.
At times family caregivers resist practical assistance from the hospice team or from their family or friends because they believe it’s their job to provide all care to their loved one. Many hospices have volunteers that will provide much needed respite care so that the caregiver can get out of the house for a little while. Self-care is very important during this time to avoid caregiver burnout. The patient may also benefit from spending time with different family and friends or the hospice volunteer.
Some people avoid honest and emotional conversations because of the intense feelings and tears that can accompany these talks. Being brave enough to be open to having conversations and accepting help from others and all the members of the hospice care team can be very helpful at reducing emotional distress.