What is hospice care - how to choose the right care for you
In the UK, around 225,000 people receive hospice or palliative care every year. Receiving end of life care is a natural part of living with terminal illness or entering your final days and helps ensure that you are as comfortable as possible during this time.
Here’s what this guide will cover:
- What comes after your terminal diagnosis?
- Why choose hospice care?
- Planning ahead in hospice
- Planning your funeral in hospice
- Services provided by Hospice UK and Marie Curie Hospices
- Frequently asked questions & more resources
What Comes After Your Terminal Diagnosis?
We understand that you may experience confusing feelings about yourself or your loved ones requiring hospice care. Receiving a terminal diagnosis or nearing the end of your life can bring up difficult and complicated feelings. Some people may experience intense sadness, fear, or even anger. You may wonder why this is happening to you, or be afraid of not having enough time with your loved ones. These are all normal and valid emotions for patients entering into hospice care.
Many people are of the impression that being in hospice means that death is imminent and that they only have a few weeks or months left. This is not the case. In many instances patients may live for years after a terminal diagnosis, but with the help of hospice and palliative carers these years can be spent pain-free and in comfort.
Why choose hospice care?
We know that this may be a scary and distressing time for you and your family, and you may not know what steps to take next. Our brilliant partners Hospice UK and Marie Curie offer extensive services for individuals just like you, right from your diagnosis to your final days. Hospice professionals will hold your hand through this difficult time, answer your questions, and make the transition as simple and comfortable as possible.
You may opt for at-home hospice care or stay in a hospice with round the clock care. For many people, hospices are a home away from home as they offer much more than just end of life care - they provide a community, companionship, and a deep understanding of your experience. Hospices not only offer direct support to the patient, they also offer counselling to family members who need someone to chat to.
If you’re worried about being able to afford hospice care, Hospice UK and Marie Curie offer their services free of cost or subsidised by charity donations, and offer benefits for people with terminal illnesses, as well as carers’ allowances.
Planning Ahead in Hospice
You may feel like you have no control over your life and what is happening to you. Planning ahead may help you feel more empowered and in control during this time. Getting your affairs in order, such as your will, final wishes, and funeral arrangements can take away some of the stress and worry and allow you to enjoy this precious time with your loved ones.
This is how Legacy of Lives’ end of life planner can help you to plan your final days and help provide you comfort in knowing that these important decisions have been taken care of.
The planner includes a “vault” where you can store important documents like your will, legal documents, property documents, marriage or partnership certificate and identity proofs like your passport or driver’s licence. Here’s a handy list of documents you’ll need.
Thinking ahead and talking about your plans with your loved ones is an important step in preparing yourself for the transition into hospice care or towards the end of your life. Remember, planning how you would like to spend your final days, getting your affairs in order, and preparing your loved ones for what is to come is a great way to ensure your peace of mind during what can be a tumultuous and stressful time for families.
We place vital importance on the role of hospice care in end of life planning, and we understand the challenges faced by patients in hospice. Kate from Hospice UK, one of our hospice partners had this to say: “Working with Legacy of Lives is something that we are incredibly proud to be doing. It is clear that they not only understand the vital importance of Hospice care, but also want to take an active role in improving patient care.”
How To Plan Your Own Funeral in Hospice
If you or a loved one is in hospice care it may be helpful to know about how to start planning a funeral. Many people are now opting to plan their own funerals in advance, so they can choose to have their service exactly how they want, as well as making it easier for their families.
Pre-planning your funeral takes out the guesswork and ensures that your wishes are fulfilled. In the Legacy of Lives’ free funeral planning tool you can choose what music and flowers you’d like, as well as adding photos and important documents to the “vault” that your trusted friends and family can access. You can also plan for funeral expenses so your family isn’t put under additional stress when you die.
Here’s what some of our users had to say about using the free planning tool:
“This tool helped my family concentrate on grieving and supported us through a very difficult time. I would highly recommend the funeral planner.”
Reg from Devon
“I LOVE the legacy vault. Getting organised feels good and planning financially for my funeral, so my family don’t have to worry.”
Louise from Wiltshire
Here is what our hospice partners say:
“Working with Legacy of Lives is something that we are incredibly proud to be doing. It is clear that they not only understand the vital importance of Hospice care, but also want to take an active role in improving patient care. The funds raised by this partnership will help us to maintain and expand our care as well as raising vital awareness of end-of-life planning. This is an area that is incredibly difficult to talk about, but is incredibly important to ensure that families are looked after and individuals get the care they need.”
Kate - Hospice UK
Services Provided by Hospice UK and Marie Curie Hospices
Marie Curie has 9 hospices in the UK, and they offer highly trained hospice carers to provide support for patients opting for at-home hospice care.
Hospice UK supports 200 hospices across the UK and offers nurses, counselling and advice.
Highly trained and experienced hospice nurses, like those at Hospice UK and Marie Curie Hospice, do their best to make patients’ final days pleasant and stress-free, as well as supporting the families of patients during what can be a very difficult time. Hospice carers form close relationships with patients and families, even becoming a part of the family they’re supporting.
Hospice carers come from a diverse range of backgrounds and cultures and can speak several languages. You will be able to get a carer who understands your culture or religious values and speaks your language.
Hospice UK and Marie Curie also offer advice pages for frequently asked questions, like
- What to expect when you are dying and
- What to expect when a loved one is dying as well as bereavement support services and support hotlines as follows:
Marie Curie Helpline: 0800 090 2309
Marie Curie also has an online community where you can meet and chat with other patients, and families of patients, who are experiencing the same challenges you are. You can log on here.
FAQs and Resources
What is Hospice or Palliative Care?
Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life. You may opt for at-home hospice care, or choose to stay at a hospice centre which specialises in end of life care.
Palliative care is specialised medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person's current care by focusing on quality of life for them and their family. ( Reference )
How To Support A Friend in Hospice
It can be difficult to know how to best support your friend as they enter into palliative care. We have a simple guide on What To Do If Your Friend Is Dying. Getting more comfortable with talking about death is also something that many people find helpful when entering hospice care. You can learn how to get started here.
While entering hospice or end-of-life care may be a difficult and emotional time for you and your family, the aim of hospice care is to make your final days as comfortable and joyful as possible. Try to take the time to access the resources listed above or search our website for more information. This may help you and your loved ones feel empowered and ready to take on this next part of life's journey.