Palliative care can provide great comfort to patients suffering from a terminal illness, and also their families. The World Health Organisation (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
Why is Palliative care important?
Palliative care’s main aim is to maximise the quality of life of a terminally ill patient and to provide support to their loved ones. A large part of this is symptom control and stopping the negative impact these symptoms might have on their life.
Common symptoms that affect people with terminal illnesses are –
This is one of the most obvious symptoms and is usually the most severe. The main point of palliative care is to give a person a good quality of life. Minimising pain is a key part of doing that. Any pain felt can cause great distress to both the patient and their family and exacerbate other symptoms. It can also interrupt sleep patterns that can negatively affect visits from loved ones, something both parties benefit from greatly.
This is where the patient has a subjective sensation of breathlessness and can be extremely distressing. This is a common symptom of dying patients but can be treated. Opioids and benzodiazepines are usually prescribed and the patient should be monitored to ensure symptoms are managed effectively.
This is linked with delirium at the end of life and can cause serious confusion in the patient. The main symptoms associated with restlessness and delirium are “anguish (spiritual, emotional or physical), anxiety, agitation, and cognitive failure”. These conditions are usually treated with a strong sedative such as haloperidol.
This can be extremely uncomfortable for loved ones of the patient to hear. When a patient is close to the end, control of secretions in the throat loosens, and they start pooling. The Death rattle is when air moves over these pools of secretions and makes an unsettling sound. It doesn’t cause discomfort to the patient but can be distressing for the family. Adjusting the position of the head and using anticholinergics can help.
Managing these symptoms not only helps with the distress and comfort of the patients, but it goes a long way to help the families come to terms with what’s happening to their loved one and lets them remember them with dignity. This is just a few reasons as to why good Palliative care is so important.
What’s the difference between Hospices and Hospitals in regards to Palliative care?
Hospices and hospitals both offer palliative care, and both are offered free of charge. However, there can sometimes be a difference between the two services offered.
One major difference is how they are operated. Palliative care is a department in a hospital that provides excellent care to terminally ill patients. However there are hundreds of patients in the hospital (not necessarily terminally ill), and time spent with each patient can be limited.
Hospices often will have very limited bed space with catchment areas for who is eligible to receive their care. They have dedicated teams who will look after patients 24/7 in the hospice, and also teams that are on the road going to people’s houses, making sure they are also looked after. The more severe cases are usually prioritised for a bed space and will have their meals provided and round the clock care. This allows healthcare professionals a lot more face to face time with their patients. This can lead to a better understanding of their wants and needs. The rest of the patients in the catchment area are also looked after at home, and ensure they are comfortable as well.
Hospitals are so important across all healthcare areas, they cannot afford palliative care the same level of priority as in a Hospice. Hospitals have to deal with an enormous variety of health problems which can often be severe. Their main priority will always be to save lives, and this is one of the reasons hospices were created in the first place.
Palliative Care is the sole reason hospices operate, and their core aim is to provide effective end of life care to terminally ill patients. Hospitals priority is to save lives, whereas a hospice’s main priority is to give a patient the very best quality of life, from the moment that they are diagnosed with a condition that can’t be cured.
Hospices will usually have a café area where patients can come and socialise with carers and other patients, while often having a lot of activities on offer such as knitting clubs etc. This can be a massive part of their treatment as it gives them some semblance of a normal life, and limits the impact their condition has upon them. These centres and groups are open to all patients including home care patients.
Some hospices are even lucky enough to have beautiful gardens in which patients can wander and enjoy nature in all its beauty. Hospitals will also have cafes and areas where patients can relax however there are differences. Most hospitals are much busier than your average hospice and therefore a number of people coming and going will be substantial, leading to a less relaxing atmosphere.
Also, everyone in these areas might be going through different procedures and illnesses and it might be more difficult for the patient to connect with people and talk about what’s going on with them, in this environment. There is a lot more communal feel in a hospice compared to a hospital, with everyone having similar struggles and that can form a strong support network for the patient.
Hospitals were built to save lives. They were built to try and utilise space and to perform their function efficiently. This means a patient can sometimes be in a room with many other people and it can seem very clinical, as that is the nature of a hospital. This can upset some patients, as the number one desire of someone suffering from a terminal illness is to spend their last remaining days at home rather than in a hospital. As hard as you try, it’s difficult to make a hospital feel like a home, and hospitals often have stricter visiting times that hospices (however hospitals can often be accommodating for terminally ill patients).
Hospices will always try and accommodate this wish. Home is important to everyone, and when someone has a life-limiting illness, being around family and familiar surroundings can help massively in their palliative care. This is why, where possible, hospices will try and treat you at home using their home care teams (if they have one).
However, if you have to be in a hospice to receive the suitable care, hospices are far from the dark dingy rooms that they are often portrayed to be. They are always bright and welcoming places, to try and make the patients feel as at home as possible. They try and create a communal feel to the place to help patients settle as best they can to their new surroundings. Loved ones are welcomed to visit and are encouraged to come whenever they want. This helps to try and fit around busy schedules and limit the amount of stress the situation is bound to bring.
Hospices are part-funded by the NHS but most will have to raise a substantial amount of money from donations from people in the local community, to be able to run their services free of charge. Hospitals will often send patients to their local hospice to have treatment because it is easier all round. The hospice is usually closer to the patient as it is in their community, whereas the hospital might be significantly further out.
The charity aspect of a hospice can further enhance its community feel. Hospices will often put on fundraising events in the local community to invite people to spend money and have a good time. This makes the hospice known in the community and lets the patients know they are cared about as strangers are donating money towards their care. Also, it lets their families know that they aren’t the first to go through this terrible time and they won’t be the last, as most of the people who donate have personal dealings with the hospice.
It really does emphasise that community aspect, and that can be an underestimated part of palliative care. It brings the community together and allows people to share their experiences and help try and put their minds at ease. Most hospices will also offer spiritual counselling and bereavement counselling to loved ones of deceased patients to aid in the grief process.
Palliative care does not save lives. But, if someone cannot be saved, they still deserve to be looked after and supported.
Hospices are vital to this process and provide top quality palliative care to their communities. They are not only crucial in the provision of dedicated palliative care, but they are also leaders in palliative care research and education. They are always looking to improve the level of care offered. Dame Cicely Saunders founded the modern hospice movement with the start of St Christopher’s Hospice in 1967. Her quote best describes what palliative care is all about…
You matter because you are you and you matter until the last moment of your life