Whether people have been given a time frame for their end of life, or are merely preparing for the worst, the thought of how to plan for death can be daunting and leave us feeling lost. However, there are some special people who will be there with you and support you through the difficult times you are facing – palliative care professionals. (Image Source: The Washington Post)
By Ashleigh Buck | @ashkbuck
We all want the least amount of suffering for our loved ones when they are unwell, and for them to be the most comfortable they can be. Palliative nurses provide the best care, ensuring that their patients’ needs and wants come first.
Euthanasia, or voluntary assisted dying (VAD), is something many people believe would be beneficial to aid those who are in their final moments of life. However, nurses who have worked alongside those suffering, have concerns over the wellbeing and treatment of patients, believing sufficient care is taken without including the option of VAD.
Cathy Marzahn was a district nurse and worked in palliative care for many years. She is completely against the logic behind voluntary assisted dying.
In her role, Cathy experienced some of the best, yet also hardest and saddest times in nursing when working alongside dying patients.
“The atmosphere depended solely on the day and the condition of the patient and the family,” Cathy said.
“Sometimes it was tense; other times joyful.”
Voluntary assisted dying will allow a patient who has been given six months or less to live, and has a sound mind to give consent, the ability to ask to end their life. This must be done so with the support of two separate doctors who are not involved in the patient’s case, and it must be clear that there is no form of coercion.
Cathy believes that the input of VAD is not beneficial in any way to the patient.
“I think it gives the message that we can no longer offer any assistance, that there is no hope, that the person is of no further value and that it is better for them to be dead sooner rather than later,” she said.
“Despite supposed safeguards I think there is too much opportunity for coercion and that over time strict guidelines would be weakened.
“I also know that people with a terminal illness have very different stages of acceptance of their condition and can at times just wish they were dead, but with loving support, pain relief and good symptom management can have very meaningful times ahead of them.
“I believe in SA we have excellent palliative care, in home and in hospital care and support for family and friends.”
Opinions about the progression of voluntary assisted dying vary greatly among those working in palliative care.
Julie Barker* was the manager of a hospice until last year, and as someone who worked closely with inpatients, is cautiously in favour of the bill, but does have her own concerns.
“To be able to be part of this intimate time in a patient’s life is a privilege,” Julie said. “It is a reminder that life as we experience it is never forever, so it is important to live your life as fully as possible.”
“People who have been diagnosed with a terminal illness lose control of so much of their life that probably by knowing they have a right to make this choice would allow them some control and alleviate some of their fear of their inevitable demise.
“I am a staunch advocate for palliative care but do believe that for many people diagnosed with a terminal illness the introduction to palliative care services comes too late. However, I do believe that if good palliative care is carried out many will not actually make use of the assisted dying mechanism but having that choice to be able could benefit them.”
Those who are in palliative care are given the best treatment to ensure they are as comfortable as possible. This varies for each patient, and of course the wishes of their family are considered as well.
“Emotional, physical, and spiritual support can be given to both the patient and the family,” Cathy said.
“Listening and doing your utmost to meet their needs, good pain relief, symptom management, provision of aids to make care in the home easier.
She says providing physical support to the patient is essential.
“Good basic nursing care: washing, pressure area care, hydration, catheters, bowel care, medication administration,” she said.
But it is a time for other support as well.
“For many people this is a time when they do seek out support from priests, pastors, church, family and appreciate this being included in their care,” Cathy said.
Julie shared similar examples of treatment that is used to support those in palliative care. Especially outlining the importance of being comfortable as a nurse or doctor to discuss the patient’s status and being able to provide support through honest conversations.
“I feel many in the medical profession are reluctant and insufficiently skilled to have honest conversations with patients about the true trajectory of their illness,” Julie said.
“I also believe many doctors do not look at the patient holistically when they have a terminal diagnosis and disregard quality of life when advocating for treatment.
“To talk about dying you need to be very comfortable about your own mortality and I think this is severely lacking in many in the medical profession. They are trained to heal but at times fail to recognise that treatments cause suffering.”
Working within such a trying and emotionally exhausting profession allows palliative care workers to become better accustomed to the progression of their own life and the ability to accept.
“I have greater respect for my patients and their families and learned to listen more and be flexible in the care that I gave. It was a privilege to be in peoples’ homes at such a significant time in their lives and be able to assist them in such a difficult time,” Cathy said.
Julie spoke about how working in palliative care allowed her to become more comfortable discussing her own mortality.
“I have become very reflective about my own behaviour and responses and believe I have a lot more insight into human nature than I did before taking on a palliative care career.”
Nurses and doctors work tirelessly to ensure patients receive the best possible care at any stage of their illness. Understanding the difficulties in a profession such as palliative care allows us to become aware of what lengths are taken when supporting our loved ones in their final moments.
*Names within this article have been changed or omitted for privacy reasons.