Palliative Care in the Management of Advanced or Terminal Illnesses

Discussion

Gastric Antral Vascular Ectasia (GAVE) syndrome:

GAVE is an uncommon but often severe cause of upper GI bleeding, responsible for about 4% of non-variceal upper GI haemorrhage. The diagnosis is mainly based on endoscopic pattern and for uncertain cases, on histology. GAVE is characterised by a pathognomonic endoscopic pattern, mainly represented by red spots either organised in stripes radially departing from pylorus, defined as ‘watermelon stomach’, or if arranged in a diffused way, the so-called ‘honeycomb stomach’. The pathogenesis of GAVE is obscure. It is often associated with a number of conditions, including portal hypertension, chronic renal failure, and autoimmune disorders. Many therapeutic options have been proposed including surgical, endoscopic and medical choices. Medical therapy has not clearly shown satisfactory results and surgery should only be considered for refractory severe cases. Endoscopic therapy, particular treatment with APC, has shown to be effective and also safer than surgery, and should be considered the first-line treatment for patients with GAVE –related bleeding.

Futile treatment in end-of-life care and transition to palliative care:

Futile medical treatment is a pressing challenge for Australian clinicians and the Australian health system. Futile treatment can prevent a good death and may cause distress to patients and families, as well as moral distress to health professionals. However, the conflict exists, the physicians may think it is futile, but the family may not. It is generally accepted that a medical judgement that treatment is likely to be futile is a necessary starting point for discussing the value of continuing treatment.

When to cease haemodialysis? This is not a straightforward decision to make and often involves the family members and input of an Aboriginal Health Worker that speaks the client’s language. This enables discussions with the client and their decision makers in outlining goals and values placed around the benefit and burden of further treatment. This approach incorporates medical, psychosocial, cultural and spiritual considerations that are important to Aboriginal communities across Australia. It is equally important that when the goals of care are shifted to palliation, physicians should make clear that those patients would continue to have a wide range of options for supportive care and that their access to physician resources would not change. This would help patients remain confident about the plan of care and not feel abandoned when disease-fighting regimens are no longer an option.

Who is the Main Decision-maker in Aboriginal Culture?

In this case, initially her husband was the main decision maker but the final end of life decision was made by her sister, who acknowledged the need to return to Country to die. Literature presented shows that Aboriginal patients strongly preferred immediate and extended family members to be involved in medical decision making. When it comes to end-of-life decision making, family members of many Aboriginal patients attempt to balance keeping their loved ones informed while still allowing them to maintain hope. The decision-making processes in Aboriginal communities are collective and often protracted. Particular people in their “skin” group will make decisions with or on behalf of an individual. Family’s meetings and decisions made would likely influence patient’s care considerably in Aboriginal culture.

Advance Care Planning

Advance care planning is intended to enable individuals to make plans for their future health care. The process encourages individuals to reflect on what is important to them, on their beliefs, values, goals and preferences in life and how they want to be cared for if they reach a point where they cannot communicate decisions about medical interventions for themselves.

Several studies have shown that early involvement of specialised palliative care services with advanced diseases improves quality of life, increases satisfaction with care and mitigates depression. Despite documented benefits, palliative care is underutilised in the management of advanced or terminal illnesses. 

In Nancy’s case, the referral to the palliative care team was late and the advance care plan was done ‘just in time’ as she deteriorated acutely after that. Fortunately enough, although her disease was advanced, she was able to indicate her preferences of care.

If the palliative care team had been involved earlier, helping Nancy to understand the role of the palliative care team better. More time could have spent with Nancy discussing advance care planning and the goal of the care earlier; perhaps she may have chosen earlier to return to her Country and spent more time with her family.

Common misconceptions about palliative care and barriers to appropriate referrals and why palliative care?

Several factors may account for the underutilisation of palliative care services, including misperceptions about the intent and scope of palliative care (thought to be for patients with only terminal malignant diagnoses and fear that if they agree to receive palliative care, their diseases will not be treated. Moreover, uncertainty about prognosis poses an additional challenge for physicians and a lack of physician comfort with end-of-life conversations, including the fear of depriving patients of hope, can also create a barrier to palliative care referrals. Specific key challenges in palliative care for Aboriginal communities include

• geographic distance and remoteness Limited access of Aboriginal patients to healthcare often results in late diagnosis of complex chronic illnesses which may result in further complications or late referral to palliative care services
• socioeconomic factors and cultural barriers and
• interpersonal dynamics challenging client/clinician interactions.

There is now an overwhelming body of evidence that for patients with serious illness receipt of palliative care is better in all respects than no access and that early access is better than late. Multiplies studies of palliative care programs in different countries and health care system show they can improve patient outcomes, including symptom control and quality of life and caregiver outcomes such as reduced stress and dysfunctional grief. In developed countries, cancer patients are relatively well provided for, with good access to palliative care units and hospices, at least urban centres. Community hospitals and rural areas are, however, less well served, and people with chronic noncancer diagnoses have much poorer access specialist palliative care programs.

In this case, the palliative care team and the treating team have witnessed Nancy being torn between her physical illness and spiritual needs from the beginning of her medical journey. From the follow-up bereavement visit, Nancy’s family acknowledged their appreciation for the culturally and spiritually sensitive care received from our team. This comment reveals the depth of the connection that can be established with the families and the importance of cultural and spiritual sensitivity in providing quality palliative care.

Health Disparity in Remoteness:

There are significant practical obstacles that need to be continually overcome when working with Aboriginal people in remote areas. The hardships associated with rural and remote patients is that they are often isolated geographically due to dispersed population patterns and are therefore often required to travel long distances to access services. In Australia, health care services are disproportionately concentrated in major urban areas. If Nancy had lived in a metropolitan area, it would have been easier for her to access medical services, which was especially important given the complexity of her illness; she would have received blood transfusions during her haemodialysis as required therefore not needed extra hospital admissions and thus physically remain away from her family. In this case, she might have felt more supported emotionally and culturally.

Place of death and spiritual wellbeing-let me die in my Country:

The Aboriginal and Torres Strait Islander population is becoming increasing urbanized. Since the 1996 Census, the proportion of Aboriginal and Torres Strait Islander people in urban areas has increased from 73% to 79%. This was largely driven by the proportion of Aboriginal and Torres Strait Islander population in capital cities, which has increased from 30% in 1996 to 35% in 2016. 

Aboriginal people can have different and unique languages, customs, beliefs, healing practices and cultural practices depending on what community they are from. For many Aboriginal people, the topic of death and dying is a very sensitive area and physicians cannot generalise across all Aboriginal communities in relation to spiritual values and beliefs. Importantly, cultural consideration in Australian Aboriginal communities that needs to be respected includes the importance of dying on traditional lands.