"Why Palliative Care is bad" - myths & misconceptions

Clearing up some misconceptions on Palliative Care.The phrase ‘palliative care’ tends to carry certain connotations and stigma, but there is a lot more to this type of care than many people think. Here, we are taking a closer look at what this entails, who it is for (and not for), some popular misconceptions about palliative care, its benefits, why many people are frightened to start palliative care, questions you may want to ask if you have been referred, and more. At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of domiciliary care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global home care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about palliative care, we can help.

What is palliative care?

Palliative care is a type of medical care designed for those with a serious illness who need help managing their symptoms and pain. Often those who are undergoing treatment for a medical condition will suffer symptoms, and palliative care can help to manage these in order to significantly improve the person’s quality of life. You can learn more about this type of care in our guide: What Is Palliative Care?

Who is palliative care not for?

Many people can benefit from palliative care, but some may not require this or may not be referred for it. For example, people who are not experiencing symptoms or pain from their illness, or those whose quality of life has not been affected. Similarly, people who have been cured during the process of palliative care will no longer have a need for this. According to the World Health Organization, around the world only around 14% of people who require palliative care currently receive it, and a lack of training for clinicians around this type of care is thought to be part of the cause. Further studies suggest one of the main obstacles for patients receiving palliative care at the right time is that healthcare professionals are not always able to reliably identify who could most benefit from this care. A person’s diagnosis can also affect whether or not they are referred for palliative care, as research suggests that often people with non-cancer related conditions are left out of palliative care referrals despite having many of the same symptom management needs and pain-relief needs. Only around 20% of palliative care referrals are for those with non-cancer related diagnoses.While there are some people who will not benefit from palliative care, and others who will refuse it based on prior misconceptions, it is thought that more people could be benefitting from early palliative care interventions but may not be receiving it for the above reasons. 

What are the misconceptions about palliative care?

Palliative care is surrounded by stigma as it is so heavily associated with end-of-life care. For a lot of people who are faced with a difficult diagnosis, even hearing the phrase ‘palliative care’ can impact their mindset in a very negative way if they believe this means they have limited time and are being given end-of-life care. Making this distinction is incredibly important.Here are some of the most common myths and misconceptions about palliative care:

“Palliative care means end-of-life care”

The word ‘palliate’ means to make symptoms less severe without removing the cause. In end-of-life patients, this means focusing on making people as symptom-free as possible as they approach the end of their life, but for someone with a non-terminal illness, this can provide effective symptom management alongside another treatment designed to tackle the underlying cause. In short, palliative care is designed for anyone with a serious illness who is experiencing symptoms and/or pain, regardless of the outlook. According to the World Health Organization, one of the barriers to palliative care is a lack of awareness about what palliative care actually does, and this extends to the public, policy-makers, health professionals and more. 

“Palliative care means symptoms and pain are severe”

This can be true, but it is not always the case. The aim of palliative care is to improve someone’s quality of life, and this can be done whether or not someone’s symptoms are considered severe. A person could live with palliative care for years and carry on with day-to-day life. 

“Palliative care only deals with pain”

This type of care is very holistic, meaning it approaches care from a physical, psychological and even spiritual angle. If someone is living with a significant amount of pain, this can be managed, but the emotional aspects of this can also be explored to help people stay positive and enjoy life. 

“Palliative care only takes place in a hospice”

This is untrue. Palliative care may be given to someone in a hospice or hospital, but regardless of your diagnosis, in most cases you can receive this type of care in the comfort of your own home if you wish. Palliative care teams work together to provide the same effective care in whichever location the patient prefers. 

“People receiving palliative care can expect more symptoms and more pain”

Research suggests that one of the barriers to palliative care is the misconception that this type of care means death is expected, and therefore any symptoms should be more tolerable. Palliative care teams will always do everything possible to alleviate the symptoms and pain, and this does not change as someone moves into the end-of-life stage of this type of care. 

“Palliative care means my doctor will no longer be involved”

Many people worry that beginning palliative care means they will no longer receive treatment or help from their own doctor. This is not the case. Oftentimes a person’s own doctor will work alongside or as part of the palliative care team to ensure continuity of care, and will oversee this process. Other times, they will hand you over to the palliative care team but still see you for regular check-ups to make sure things are going well. 

“Palliative care means treatment is withdrawn”

The misconception of palliative care being the same as end-of-life care means many people feel this suggests treatments will be stopped and they will no longer be fighting a disease, only managing it. This can be true in some cases, but an open dialogue with your doctor should clarify whether or not any treatments are being stopped. In many cases, palliative care is less about withdrawing care and more about adding other helpful interventions. One study asked healthcare professionals about patient perspectives on palliative care referrals, and one response stated: “I sort of emphasise that [palliative care] is about adding extra things in. It’s not about taking things away”

Why is palliative care beneficial?

There are many reasons why palliative care can benefit anyone living with a serious illness, and this is the case whether they have a terminal diagnosis or not. For example: 

• It helps people to live pain-free or with reduced pain.
• It can reduce challenging symptoms, and as a result, improve quality of life. A 2020 study on people with Parkinson’s disease and similar disorders found those who received palliative care scored 3 points higher on their quality of life score than those receiving traditional treatment.
• It could reduce the risk of depression in people living with a serious illness. Studies have found early palliative care for those diagnosed with advanced cancer led to a lower risk of depression. 
• It provides further emotional and practical support to families who are unsure of how to navigate seeing their loved one in pain.
• It has the potential to help people with a serious illness live longer. A 2015 study found patients with a serious illness who received palliative care ended up living longer than those who did not receive the same care, so there could be potential for palliative care to extend someone’s life expectancy in certain cases. 
• If implemented early, palliative care can have further benefits. One 2020 study on the impact of early palliative care interventions found them to be a valuable, cost-effective component in the care of patients with cancer to improve quality of life. 
• It can reduce unnecessary hospital admissions, according to the World Health Organization. 

How can misconceptions around palliative care be improved? 

Improving access to – and people’s opinions of – palliative care will become more important in the coming years, as studies predict that if the upward trend from previous years continues, 42.4% more people in England and Wales will require palliative care by 2040. When it comes to challenging people’s misconceptions about this controversial type of care, studies have identified some areas in which healthcare professionals can approach the referral of palliative care differently. For example:

• Patients must be better educated in the difference between palliative care and end-of-life care so they know which type of care they are receiving 
• A conversation should be had with the patient first about the status of their illness before mentioning the phrase ‘palliative’, to avoid current stigma clouding their judgement and leading them to ignore the context of the conversation 
• If a cancer diagnosis needs to be discussed, it can be more beneficial to talk about this in a separate appointment and broach the subject of palliative care later, as this may be a lot for the person to take in in the same day  
• Palliative care could be introduced as a method of symptom management 
• The palliative care team could be introduced as pain specialists to emphasise their expertise in this area rather than their association with end-of-life care 
• It should be stressed that palliative care (that is not attached to end-of-life care) is focused on adding helpful elements to the patient’s care rather than withdrawing care
• It should be stated that palliative care does not mean the patient will stop seeing their own doctor or specialist – often they will work together to ensure the best outcome 
• One benefit of palliative care at home that should be stated is its association with fewer hospital visits due to an increased level of comfort 
• Conversations around palliative care should also emphasise how beneficial this can be for a person’s partner or family, as it offers them additional support 

What questions should I ask if I have been offered palliative care?If you have recently been offered palliative care and are unsure whether this is the right kind of care for your current situation, here are a few questions you may wish to ask, and some of our helpful guides that could provide answers: 

• What is palliative care?

• What is the difference between end-of-life care and palliative care?

• • What symptoms am I likely to experience? 
  • Can I have palliative care at home? 

• When is the right time to start palliative care?

• • What options are there for pain management? 
  • Who can I have with me during palliative care? 

• What will palliative care look like if it progresses to end-of-life care? 

• • What emotional support will I receive during this process? 

• How do I pay for palliative care? 

• • What should I be putting in place now to make things easier on my loved ones later? (You may find our guides helpful: Making An Advance Statement For Care, Health And Welfare Power Of Attorney, and Understanding The End Of Life Care Pathway)

• Is palliative care effective for people with dementia? 

• What if I don’t want to continue my treatment? 

If you have been recommended palliative care, you likely have a lot of questions and decisions to make, which can be overwhelming. Home care can be helpful during this time to take care of other needs outside of the palliative care process, as well as complementing this care, such as personal care, home help and housekeeping, specialist cancer care, and more. If you are looking to put home care in place to make life easier for yourself or a loved one, our award-winning home care at Home Instead could offer you the bespoke, person-centred care you need alongside the palliative care process provided by medical professionals. We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.