Palliative Care and End-of-life Care
It’s a common misconception that you have to stay or go into hospital when you are nearing the end of your life. This isn’t always the case; palliative care and end-of-life care can be given to patients in their homes.
By receiving care at home, you can continue to live where you feel most secure and at ease. You can stay close to the people you care about, comfortable in your own surroundings and where you’ve made memories over the years.
Whether you prefer to stay at home, in a care facility, a hospice, or a hospital, everyone who is nearing the end of their life has the right to high-quality care.
You have a right to get care where you choose and in the setting of your choice for the remaining weeks of your life. So you can live as fully as you can until your final moments and pass away with dignity.
With End-of-life care and Palliative care, the care is personalised to the needs of the individual. – No care plan is the same.
If you decide to receive care at home, your eligibility for NHS continuing healthcare should be evaluated. The NHS provides free care to people with specific medical needs. Your doctor or nurse can refer you to social services.
By speaking with your GP, the local council, or a social worker, they can assist you in setting up an evaluation.
What is Palliative Care?
Palliative care is a service which aims to make you comfortable as possible during the last days of your life. If you have an illness that cannot be cured, palliative care provides a solution to help you take control of the end of your life. By choosing to stay in your own home, without compromising on professional medical care.
Palliatve care will ensure your pain relief is managed properly, along with assistance with other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. Palitative care is considered a holistic approach because it deals with you as a "whole" person, not just your illness, or symptoms.
Palliative care is available when you first learn you have a life-limiting (terminal) illness. You might be able to receive palliative care while you are still receiving other therapies to treat your condition.
Palliative Care at Home for a Life-Limiting Illness
Palliative care is given to a patient when a serious or fatal illness has been identified. Easing both the patient’s and their loved ones’ physical symptoms and psychological discomfort is at the forefront of this specialist care.
The goal of palliative care is to maximise the quality of life for both the patient and their loved ones by adopting a comprehensive, mixed-methods approach to treatment.
When you begin receiving palliative care and palliative medicine, a team composed of your general practitioner (GP), community nurses, social workers, and specialists will make frequent visits to you.
What palliative care services can you receive at home?
Personal care, such as help with dressing, bathing and toileting
Continence care
Help with medication
Management of Pain – both physical pain, emotional and pain medications
Help with mobility, including home adaptations to help you move around the house
Housekeeping
Meal preparation
Food shopping and prescription collection
Companionship to support your independent living
Psychological supportive care for the patient and the family
The condition or situation you have will determine the kind of services you require, but all are given in accordance with your needs and preferences.
Some symptoms can be effectively controlled at home, while others might be more challenging.
It is suggested that you chat with your palliative care doctor. They can provide you with the details you require, explain what to anticipate, and assist you with “Advance Care Planning”.
Who can Receive Palliative Care?
Palliative care is for those suffering from a life-limiting illness that cannot be cured.
That includes those who: Are suffering from an advanced illness such as cancer, dementia, or motor neurone disease.
Who provides palliative care?
Palliative care is a common service offered at home by healthcare professionals.
However, certain patients can require further specialised palliative care. Palliative social care professionals, nurses with training in the field, occupational therapists, or physiotherapists can provide palliative care.
Palliative care teams, which are made up of several medical specialists, can coordinate the care of patients with a terminal illness.
Specialist Palliative Care Services
Social workers and nurses who specialise in palliative care (palliative care specialists) frequently assist patients with challenging and complex diagnoses, such as patients with cancer.
A clinical nurse will assist advanced cancer patients and their families by managing pain, offering psychological support, educating them about the disease, and assisting with future care planning.
Occupational therapists, physiotherapists, and counsellors are some more specialists who might visit the patient now and then too.
Choices for Palliative Care
The type of care you receive and its intensity will vary depending on your health and condition.
Palliative Hospice Care
If you want to stay in your own home, you can get assistance from a hospice.
From the moment your condition has been declared terminal until the end of your life, you are eligible for hospice care. Depending on your health, you might need hospice services for a long time.
Hospice care can be given at home while only making occasional trips to the hospice. This will enable you to meet other patients and receive more resources and access different services than you could at home.
A hospice medical team is a multidisciplinary team. They are a team of healthcare professionals formed of nurses, social workers, therapists, counsellors, and volunteers who can offer health services. Services like physical therapy, counselling for grief, spiritual and emotional response support, and rehabilitation.
Home visits
Regular home visits can be your best bet if you prefer individuals to visit you for shorter bursts of time to help you with your requirements.
This gives you the freedom to select the precise times a caregiver visits you, which may even include overnight stays!
Home visits might range from quick checkups lasting 30 minutes to multiple visits each day.
Live-In Care
You could hire a live-in caregiver who has received specialised training. They can assist you with cooking, personal care, or complex care 24 hours a day.
Importantly, live-in carers match your personality and care needs. Therefore are more likely to become good friends.
Benefits of Palliative Care at Home
Personalised care at home instead of in a hospital, for the last year(s) and months of life will result in a better experience. Tailored around what really matters to the person, and more sustainable health and care services.
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One of the main advantages of receiving palliative care at home is that it enables a patient to spend their final weeks, days, and months in the environment where they feel most comfortable and secure. This allows patients to receive palliative treatment while being with someone they know and trust. Knowing this can bring comfort to families and close friends in addition to reassuring the person receiving care. As a result, palliative care and hospice care are often used interchangeably.
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Personalised care at home instead of in a hospital, for the last year(s) and months of life will result in a better experience. Tailored around what really matters to the person, and more sustainable health and care services.
There will also be less inconvenience for all parties if care is provided at home rather than in a hospital or hospice.
With 24-hour care at home, any changes in the patient’s condition will be swiftly identified and addressed.
Additionally, you can feel secure knowing that the caregiver has undergone a thorough assessment and received training in palliative care specifically. You can rest assured knowing that they can support your family not only on a practical but an emotional level too.
If you have other questions about your care, it is best to speak with your doctor, nurse or healthcare team looking after you.
How do I get Palliative Care?
You may need a referral to access palliative care. That means a healthcare professional who is currently caring for you putting you in touch with a local palliative care service or professional. To get a referral, speak with: your GP, your district nurse, another healthcare professional. If you are in a hospital, care home or nursing home, or hospice, the healthcare professionals there should be able to arrange palliative care for you.
End-of-Life Care at Home
End-of-life care, which includes palliative care, is the provision of treatment and support to ensure that a person passes away as peacefully as possible. End-of-life care at home helps the patient maintain as much dignity as possible, in a location of their choice, accompanied by their loved ones.
The care you receive will only include the therapies you choose to receive since you can plan your end-of-life care in advance.
In the event that you are unable to make decisions about your care in the future, end-of-life care helps family members and friends understand what is best for you.
Everyone has the right to excellent care to guarantee a “good death,” and you can receive end-of-life care at home.
A 'good death' at Home
A “good death” is a term for when the dying person was cared for with respect, compassion, and dignity in their final hours.
This entails keeping the individual hygienic and at ease in settings that are familiar to them, close to those who were significant to them.
Many people who are nearing the end of their lives choose to spend their final moments at home. People feel more comfortable at home, sleeping in their own bed and surrounded by their own belongings. As they are with their loved ones, close friends, neighbours, and pets, it is known to be less stressful for people living with dementia too.
End of Life Care Services at Home
The services that palliative care provides are largely the same as those provided for end-of-life care.
In addition to offering bereavement support to close relatives and friends of the dying person, hospices can also offer end-of-life care.
It is crucial to communicate your desires to the medical staff caring for you to obtain the care you choose.
Additionally, similar to palliative care, some symptoms may be more challenging to adequately treat at home as opposed to in a hospice or hospital.
Make sure you discuss your best alternatives with your doctor so you can create a care plan that is ideal for your circumstances.
When does end-of-life care begin?
The conversation about End-of-Life care should start when someone’s death is anticipated to occur within the next year (12 months). And should start as soon as debilitating symptoms start to appear.
End-of-life care can help people in a variety of circumstances. It can help them long-term or short-term.
What End-of-Life Care Services can you Receive at Home?
The doctor is in charge of overseeing the medical care given, and also arranges for other medical health care teams and specialists to visit and write prescriptions.
The nurses can offer assistance with personal care, incontinence care. They can offer guidance on a variety of potential problems, such as how to avoid pressure sores.
They can also provide the patient and their families with emotional support.
To manage pain and other symptoms, a patient may need a clinical nurse specialist to provide professional palliative care.
Spiritual needs at the end of life
Spiritual needs might be just as crucial for those who are nearing the end of their lives as their physical ones. Finding purpose in life, resolving interpersonal conflicts, or coming to terms with one’s situation are all examples of spiritual needs. An individual who is dying could find solace in addressing unresolved conflicts with friends or relatives.
You may find that a social worker or counsellor’s visit could be beneficial not only to the patient but to family members.
Many individuals find comfort in their beliefs. Others could experience difficulties with their spirituality or faith. It could be beneficial to pray, study religious literature, or listen to religious music. A minister, member of the clergy, rabbi, or imam are examples of members of the person’s religious community that they can speak with.
The dying person might discuss the value of their relationships with family and friends. Children might discuss how a parent has shaped the trajectory of their lives, and Grandchildren can express their gratitude to a grandparent. Friends might discuss the value of years of kindness and company.
If family and friends are unable to be there in person, they can submit a letter to be read aloud. They can also send a video or audio recording of what they would like to say.
Another method some people find calm in as they approach death is through exchanging happy memories. Studies show that everyone can find consolation in this. Some medical professionals believe that even when a patient is unconscious, they can still hear. Always converse with the dying person rather than about them. Tell the person who you are when you enter the room.
A confused person with an incurable illness could experience a moment when they appear to be thinking clearly. Profit from these opportunities, while keeping in mind that they are probably fleeting and not always an indication of things improving.
A dying person can occasionally see or communicate with those who are not there. Avoid the need to correct them, interrupt, or imply that they are hallucinating things. Allow the dying individual to experience their own world in peace. Sometimes those who are near death will report experiencing dreams in which they meet departed family members, friends, or religious figures. These dreams may elicit a variety of responses, but often they are highly consoling to them.
Caring for a Family Member at Home
When a loved one is nearing the end of life, many family members take on the role of caregiver. It can be challenging to know if what you are doing is the correct thing.
You’ll find yourself helping them with personal care chores like washing and dressing, managing medicines, and using the bathroom.
Asking your loved one’s doctor, nurses, or social worker for help about what needs to be done for your loved one is a smart option.
It can be incredibly stressful to take care of a family member who is in their final weeks or days of life, especially if their condition deteriorates quickly.
It may become more physically and emotionally taxing for you to offer care and support as a disease worsens. You may start to feel that you are not doing enough because of this.
You can leave some responsibilities to an expert or a health professional. They can relieve some tension, if caring for your loved one is something you feel you cannot do alone anymore.
Frequently Asked Questions
Palliative care focuses on relieving pain and other symptoms, providing emotional support, and ensuring good communication among patients, families, and doctors. End-of-life care includes all aspects of care provided during the last few months of someone’s life. It also involves planning for the future, such as making advance directives (living wills) and choosing where to spend the time left.
Yes. Hospice services are available at home and can provide hospice care 24 hours a day, 7 days a week. Additionally, palliative care and hospital palliative services can be combined into a single program called “home and community based palliative care.” This type of service provides comprehensive symptom management, physical comfort, counselling, and spiritual support at home.
Home palliative care services include:
- Pain relief medications
- Physical therapy
- Speech therapy
- Social work
- Spiritual counselling
- Support groups
- Caregivers education
- Communication skills training
- Nutrition counselling
- Counselling
- Medication administration
- Personal hygiene assistance
- Respite care
- Transportation
- Assisted living options
End-of-life care at home works similarly to hospice care. The primary goal is to provide relief from pain and other symptoms.
The patient receives medical treatment for any acute illnesses and is closely monitored by a team of professionals. Including physicians, nurse practitioners, registered nurses, pharmacists, social workers, chaplains, and others.
Care providers coordinate the patient’s care plan and make sure they have access to needed services. They also monitor changes in the patient’s condition and communicate with each other and the patient’s family members.
A caregiver should always be present when a person passes away, to ensure that they have someone to talk to. Someone to share thoughts and feelings with throughout this difficult time.
If you are going to be away from home while your loved one needs help, it is important to let them know that you will be leaving and when you expect to return. You might want to ask them to write down their wishes about how they would like to be cared for.
Yes. Home-based hospice care is a combination of palliative care and home health care. A trained hospice nurse visits the patient daily to assess the needs and administer medication. They may also provide physical therapy, speech therapy, nutrition counselling, and personal hygiene assistance.
Teams made up of different healthcare professionals such as nurses, GPs, physiotherapists, and occupational therapists deliver palliative care.
