September 30, 2023

Longer life vs a better death

There has been a lot of debate in recent years about when palliative care should be offered to people?

Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis.

Interdisciplinary specialists are trained to offer patients the following at the palliative stage: prevention and relief of suffering, an enhancement of quality of life for patients and their families, advice on pain and symptom management, communication about goals of care, and a coordinated care network across multiple setting and over time. Palliative care is appropriate at any age, and at any stage in a serious illness, and can be provided together with curative treatment.

Palliative care comes in multiple guises, from the primary carer, who uses basic skills and competencies to alleviate any stress from the patient. To the specialist/secondary carer, who is skilled and experienced in advanced symptom control, has good communication skills/ attentiveness, and comes from multidisciplinary networks (MDs/NPs, RNs, social workers, psychologists/psychiatrists, spiritual support, and other HCPS).

The key goals of palliative care are reducing symptom burden, improving quality of life, reducing depression, increasing patient/caregiver satisfaction with service/care, a possible increased survival, and a decrease in burnout among providers who are dealing with sick and dying patients every day.

In a 2011 consensus statement by CAPC on who to refer to palliative care in the US broke down patients into 2 criteria brackets:

Primary criteria:

  1. The “surprise” question: Would you be surprised if this patient dies within one year? (A study at DFCI as part of the Serious Illness Care Program showed that of 4,779 patients, 4047 clinicians answered ‘yes’ to this question and 732 patients were given ‘no’ to this question
  2. How frequently do you expect emergency department visits, especially for uncontrolled symptoms?
  3. What is the predicted decline in function of this patient, do they have feeding intolerance or unintended decline in weight (e.g., failure to thrive)?
  4. How complex are their care requirements (how many HCPs will they require)?

Secondary criteria:

  1. Do they need admission into long-term care facilities or medical foster homes?
  2. Do they have metastatic or advanced cancer?
  3. How advanced is their age, cognitive impairment, hip fracture, etc.?
  4. Do they have home oxygen monitoring requirements?
  5. Are they at risk of cardiac arrest?
  6. Are they a current or past hospice enrollee?
  7. Do they have limited social support?

In 2014, The National Comprehensive Cancer Network (NCCN) produced additional guidelines for palliative care screening:

  1. Do they have uncontrolled symptoms?
  2. Do they have moderate/severe distress related to diagnosis and treatment?
  3. Do they have serious comorbidities or physical and psychosocial conditions?
  4. Is there life expectancy less than 6 months?
  5. Does the family/patient have concerns about disease course and/or treatment options and have they requested palliative care consultation? 

Below you can see a table on the 7 key elements of a palliative visit that HCPs need to bear in mind:

A 2016 review from the Cochrane library on the effectiveness of early palliative care argued that in patients with advanced cancer, early palliative care may increase quality of life and reduce intense symptoms. And although effects on survival and depression were uncertain in the first report, they did suggest a clinical relevance, especially in those patients with a limited prognosis, at which time further decline in quality of life is expected, not to mention the out-of-pocket costs that many face for further lines of expensive novel targeted or immune checkpoint treatments, where progression is still expected, yet where toxicities are often debilitating.

More studies were done on this early palliation, as listed below:

The bulk of the new evidence shows that in patients offered palliative care, when they have cancer that is more than likely to progress, may well have a better quality of life, will certainly be helped in thinking through their decisions, perhaps be less likely to get depressed in that “fatalistic clinging on to hope”, and in some cases, there has been shown a potential survival benefit.

In a 2018 study by Kings College, London, in patients that developed breathlessness with lung cancer, they found that on average people had a 16% improvement in quality of life and were slightly less likely to get depressed, and in 35% of these cases, the breathlessness actually improved.

When to refer for palliative care?

The argument varies, but evidence points to ideally:

At diagnosis of metastatic cancer; at critical clinical decision points (e.g., scan visits at the time of disease progression, if a patient has a serious side effect of cancer/therapy); at sentinel events (E.R. visits, hospital admissions); and in those patients struggling with their decision as to accept palliative care.

What are the costs of treating advanced cancer in the traditional and neo-traditional way (i.e, chemo, radiotherapy, surgery, targeted therapy, immunotherapy)?

High symptom burden,

Psychological/spiritual/existential distress,

A poor quality of life (not helped by drugs that have multiple adverse events, often serious Grade 4),

Expensive treatments putting an economic burden on not only the patient but also their family, and

Resource-intensive care at the end of life (EOL).

Based on this recent data, the American Society of Clinical Oncology (ASCO) recommends:

Combining standard oncology care and palliative care early in the course of disease for all patients with metastatic cancer.

The main issues with this are the availability of services, and the numerous barriers to palliative care, i.e.,  patient/family awareness of services (so the service not being conveyed suitably and clearly to the patient and family), the perception/stigma that palliative care equals end-of-life care, issues with reimbursement (not only of drugs but the multidisciplinary palliative care team listed earlier in the article), concerns that palliative care requires giving up disease-directed therapy, and an overall shortage of palliative care providers.

In the graphs below, you can see that IV chemo does improve overall survival compared to early palliative care; however, not so the case in oral chemo, and the more the chemo regimes, the better the prognosis with early palliative care.

What of palliative care vs hospice?

Palliative care can be offered at any time during the disease course, regardless of prognosis, and patients still have access to all treatments. Hospice care in the UK is subsidized by the NHS at times, but often the bureaucracy and red tape involved in signing this off are distressing for patients, and many providers refuse NHS-funded patients (complaining about the backlog, when greed is closer to the truth). In the US, Medicare is a benefit only in patients with an expected prognosis of less than 6 months, and it requires cessation of all disease-directed therapies.

In hospice care, the target is to manage the patient’s pain and other symptoms; to support emotional, psychosocial, and spiritual aspects of dying; to provide medications, medical supplies, and equipment; to coach families on how to care for their dying lived ones; to provide inpatient hospice care; and to offer bereavement care and counselling. Palliative care is appropriate for any patient with advanced cancer and has a high symptom burden, psychological/spiritual distress, and has a confused/difficult/complicated decision-making process ahead of them. Hospice care is a component of palliative care, but palliative care is much more than hospice care. Overall, there is a growing body of data

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