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The Importance of Emotional Support in Palliative Care

Types of Emotional Support Provided in Palliative Care

Being diagnosed with a life-limiting condition will understandably cause you and people close to you anxiety about the future; questions will arise around eventual physical support needs and how you will all cope emotionally. Emotional support is as important as physical treatment in most cases, and by having your emotional needs taken care of as part of a whole-person, holistic approach to your palliative care journey will ensure that you are able to enjoy a better quality of life until the very end.

Counselling and Therapy

Talking about how you feel can often be highly beneficial when faced with a stressful situation, so chatting to someone who’s experienced in offering emotional support may help during a palliative care journey. There may be things that you would like to talk about that are too painful or emotional to discuss with family and friends, and this is where qualified counsellors or therapists can make a real difference to your final years and months.

If you are already attending day services at a local hospice or community centre then they may have counsellors that can help you, or alternatively you may prefer to talk to someone more remotely. Charitable organisations often have support lines that you and your family can access when you are needing to talk, such as Marie Curie’s helpline on 0800 090 2309 or their supportive online community. You can also talk to your community healthcare team and discover what help is available locally to support you through this time of transition.

Spiritual Support

Spirituality means different things to different people. For some, spirituality may mean religion and the role that their faith has played in their life. For others, spirituality is about the meaning of life and how we fit into the universe as a whole. Equally, it can be about discovering ourselves, our wider purpose and how we become better people for the benefit of collective society, other living beings and nature. Regardless of whether you are highly spiritual or consider yourself not to be so, it’s important that you get support from like-minded people who you feel understand you and your ethos for life. This could mean speaking to your local religious leader, finding a spiritual advisor you feel comfortable with, or just chatting to friends who share the same hobbies and interests as you.

Companionship and Social Support

Humans are sociable creatures; we enjoy spending time with people we connect with on both an emotional and intellectual level, and there’s no reason this should change throughout your palliative care journey. Perhaps you’ve always enjoyed attending a weekly club or society around a certain topic, have gone on weekends away with a like-minded group, or you just like to chat and meet up with a weekly community group. Whatever your interests, there’s no reason why you shouldn’t continue them throughout your palliative care journey, for as long as your wellbeing allows.
Accepting support can be difficult for anyone who has always been very independent, however by allowing a Helping Hands carer to accompany you to all the activities you’ve always enjoyed ensures you get the companionship you need.

Benefits of Emotional Support for Patients and Families

Knowing that your loved ones are also being emotionally supported through your palliative care journey means that you can focus on your treatments and keeping yourself as well as possible. It’s vital that your loved ones get to talk about their feelings; their inevitable anger, frustration, and perhaps even guilt, otherwise they will be emotionally vulnerable too, at a time they’ll be wanting to focus on you. That way you can make precious memories together in the time you have remaining, enjoying being with each other without worrying that there may be things left unsaid.

Improved Quality of Life

Talking about how you’re feeling can be incredibly beneficial to your overall quality of life during palliative care, according to the Better Health website. They tell us that “palliative care aims to enhance your overall sense of wellbeing. With this in mind, it is important to look after yourself, stay connected with the people around you, and do things that provide meaning to your life.”

Reduced Stress and Anxiety

Keeping stress and anxiety at bay can be extremely beneficial to your emotional wellbeing during a palliative care journey, however that’s easier said than done when faced with uncertainty about the future. Spending time with other people who enjoy the same activities as you can maintain vital social connections though, while benefitting your emotional wellbeing. Focussing on the holistic benefits of an activity, whether that’s a sport, creative activity, or dedicated relaxation exercises, may help to reduce stress and anxiety for many people.

Enhanced Coping and Resilience

Talking about things with a professional will also help you to understand your condition better, to get answers for as many of your questions as possible. While this won’t change the effectiveness of physical treatments, it can boost your emotional wellbeing, which will help you to cope with all the challenges you’re facing in your treatment. Being able to develop strong emotional resilience will depend on the level of knowledge you have about your condition, and if you don’t feel you’re being kept at the centre of your treatment plan it’s important to raise that with your doctor or community healthcare team.

Challenges in Providing Emotional Support in Palliative Care

Not everyone is comfortable with admitting how they’re feeling – they may have been brought up to keep a ‘stiff upper lip’ in the face of adversity, or they may just find it difficult to talk to people about very personal matters. Consequently, when supporting someone who is going through a difficult time in their life there can be particular challenges to understanding how they’re really feeling. Gently asking questions to encourage someone to talk about their concerns may be the best way to proceed, however it is important to respect people’s boundaries and if they don’t want to talk about the emotional effects of their palliative journey then it has to be respected.

Addressing Stigma and Barriers to Care

While many people will have the confidence to ask questions about their treatment, there are others who will trust that healthcare professionals are always acting in their best interests and accept what happens without question. Marie Curie estimates that around 92,000 people each year who need palliative care are not receiving it. They discovered that this was more common in people who were living with conditions other than cancer, such as “heart failure, chronic obstructive pulmonary disease, and dementia.” It may be particularly difficult for people to gather information about their care if they’re living with dementia for example, as they may be struggling to verbalise or articulate their wishes due to a deterioration in their cognitive ability. People living with other neurological conditions or mental health difficulties may also be at a disadvantage when it comes to overcoming barriers to care, as others may presume that by lacking mental capacity, they will not have preferences for how their care is carried out. NICE also agrees that barriers for accessing palliative care are greater for people living with conditions other than cancer, as well as “people from economically and socially deprived areas, BAME communities and LGBT people.” All of these circumstances can impact on an individual’s emotional wellbeing and expose them to increased stigma and barriers to receiving a holistic care experience.

Balancing Emotional Support with Medical Care

All healthcare workers should be focussed on the holistic wellbeing of the people they’re caring for, making sure that they take a ‘whole-person’ approach to all of the support they’re giving them. This isn’t always easy when balancing medical care as part of holistic approach, for instance, people having to travel miles from where they live to receive treatments as they’re not available closer, or people having to stay in hospital when they’d rather be at home. When such circumstances are unavoidable though people can still be kept at the centre of the decision-making process concerning their care and should be asked if they’re happy with how their treatment is progressing. This is also where receiving palliative care at home can make a huge difference to someone’s emotional wellbeing, as it may prevent them having to go into hospital for a prolonged stay. Helping Hands offers visiting and live-in care on a short or longer-term basis, depending on your circumstances and requirements. We can support you to remain in your own home for a large part of your palliative journey, working as part of the wider healthcare team to ensure that your holistic needs are given priority.

Managing Caregiver Burnout

Caregivers do incredible work; to devote themselves to the wellbeing of others is a truly wonderful thing, however by giving so much all the time they may find themselves emotionally and physically drained. Whether caregivers are family and friends trying to balance your care with their own daily lives, or they’re a healthcare professional, they all need to have an opportunity for rest and recuperation. Family members may also be battling with the emotional impact of your palliative care journey, knowing that they will eventually lose you and the implications of that. One of the best ways to ensure that your loved ones don’t become burnt out while caring for you is to arrange for some professional support. Helping Hands provide care from just an hour a week up to around the clock live-in support and can offer temporary or long-term care to complement your existing arrangements. Our carers can support you with your medication, personal care, nutritional needs, housekeeping and much more at home, as well as supporting you to make the most of your community and local area.

The Continued Need for Emotional Support in Palliative Care

People who are living with a terminal illness are likely to experience a range of emotions throughout their palliative care journey, including grief, fear, anger, resentment, and denial. Marie Curie tells us that these are a natural response to the emotional impact of a life-limiting condition however, and that “patients may feel more accepting over time as they come to terms with their illness.” As the end of life comes closer though, these emotions can surface again and increase in intensity, meaning that family members and carers should be prepared for this. Everyone is different though, and while one person may remain emotionally well throughout their palliative care journey, another may struggle to come to terms with such an impactful experience. Working out how best to support an individual on their palliative care journey is the key to their emotional wellbeing in a holistic capacity.