Discussing end of life is not an easy task, but it is a very important conversation to have with those you love and care for. It’s never too early to start having these conversations, so we’ve put together this guide to ‘getting started’ along the path of discussing end of life options.
Many people wish to pass peacefully at home, in their own comfortable environment and with loved ones close by. This might especially be the case if you’ve been cared for at home after a long hospital visit, or perhaps you don’t want to go to hospital at all when the time comes.
Planning ahead will help you maximise the time you have, while still allowing you to fulfil your wish of dying at home in the way you prefer. Planning may also enable you to focus more fully on the positives – and enjoy those life-affirming moments with friends and family. Time really is precious.
There’s a lot more to end of life than you might realise. It’s much more than just arranging the medical care required during the last days or weeks of a person’s life. Palliative care includes caring for the social and emotional needs of the person, as well as family, friends and carers. It’s a very inclusive, holistic approach to end of life.
There are many questions you might have about how palliative care can be arranged at home, but rest assured – Home Instead can help you and your family, every step of the way. We can support you and your loved ones to understand and talk about your end-of-life, so everyone can be better informed and plan ahead to ensure your wishes are put into place.
Above all, we can make sure you have the most dignified experience possible, and that your loved ones are well cared for and supported. There are many aspects to manage and plan for, which is why our Home Instead Care Managers undergo customised palliative care training to ensure we provide you with the very best care.
We can help with:
1) Setting Up at Home – you may need special equipment such as medical equipment, home modifications or an adjustable bed. Some of these items can be purchased and others can be hired. Your Home Instead Care Manager can organise these for you, so you can be most comfortable as quickly as possible without any hassle. We can also look after every aspect of equipment management, so you don’t need to worry.
2) Planning and Coordination of Care – including clinical care, nursing staff, pain relief and any specialist home visits. There can be many different service providers involved in palliative care at home, which can be overwhelming at times. We can help engage and manage different providers at the most appropriate times, to make sure you and your loved ones are not troubled in any way.
3) Pain and Symptom Management – we can support you to manage your medications and prompt you to take them at the right time of day or night, so you and your loved ones can focus on each other at all times. This helps free up your loved ones from worrying about medicines and timings, making a world of difference to your peace of mind. We can also support you to engage with a nursing service to manage your pain relief.
4) Everyday Care Management – we can support your personal care routine, as well as provide meal preparation, laundry, house cleaning and any transport to and from appointments as required.
The primary aim of palliative care is to maintain your quality of life, by providing holistic support including pain and symptom management. End of life can be a very emotional journey, and it’s important to make your wishes clear as early as possible. This will help reduce the stress on your loved ones, giving them a greater sense of comfort, control and peace of mind.
Having support services in place allows family members to maintain their relationships with you, their loved one. Consider freeing up your family members from the responsibility of being your ‘carer’ to simply being family. That’s where our Home Instead CAREGivers can be the greatest help.
Some of the questions you may wish to consider with your family members are:
1) Who will care for you? Who do you trust to make health decisions on your behalf? Who do you want to be there at your end of life?
2) What support is available to you? What medical treatment and interventions do you want, or prefer not to have?
3) When do you want someone to manage your affairs or make decisions on your behalf?
4) Where do you want to spend your last months or days?
5) How do you envisage your end of life?
6) Why are these things important to you?
These tough questions can spark difficult conversations with family members, but your Home Instead Care Manager can help you consider the options and potential consequences of various decisions. Having open, honest conversations about your end of life will make the experience easier for you and your loved ones.
Another important consideration is getting your affairs in order. It’s a good idea to document your end of life wishes in writing, as well as make or update your will, appoint a Power of Attorney or other legal representative, and decide on an Advance Health Directive. An Advance Health Directive is a legal document stating your preferences in the event you can no longer communicate.
Is your Loved One in Palliative Care?
Sometimes there is no other option but for family members to fill the role of carer. Caring for someone at the end of their life can be physically and emotionally draining. Although taking time for yourself is often easier said than done, pushing yourself too far can leave you burnt out. Moreover, it can put your own health at risk, leaving you unable to care for your loved one as you have planned or even able to be with them if you are unwell. As a carer, it is important you take care and TREAT yourself right.
T Talk. You may experience a range of feelings like fear, anger, denial or resentment about your loved one’s life-limiting illness and the demands of caring for them. Talking to a trusted friend, counsellor, social worker or chaplain can help.
R Rest. Take a break, see a movie, take a walk, meet up with friends, or simply rest. Ensure you are getting adequate sleep, some physical activity, and have times where you are able to do something that you enjoy. You may only feel confident to take a break if someone is present with your loved one. Family members, friends, volunteers or professional carers can help provide respite care.
E Eat regular meals and maintain a healthy diet. It is easy to let the basics slip when you are under pressure. But a healthy diet is critical to your overall wellbeing. It will also help you think clearly and improve your energy levels.
A Accept help from others. You are not alone. Accepting support from others is not a sign that you cannot cope. Friends and family members may offer their support – as much to help you as they need to feel they are helping. Whether they cook meals, run errands or provide you with respite, let others help you with your palliative care journey.
T Time. Dedicate time to plan ahead, be prepared and have support strategies in place to look after you and your loved one at each stage of their end-of-life journey. This will ensure you make the most of the time you have left and ensure your loved one’s final days are as positive, supportive and as comfortable as possible.
Self-care for you and your family is made easier when you hand over the mechanics of care to Home Instead – there is simply more time for you to deal with everything as a family.
Talking about and planning for dying can be difficult, but dying at home on your terms with your beloved family members present can be a beautiful and fitting end to a life well-lived.
We can help ensure the best ending possible – for more information, please read the Home Instead comprehensive booklet ‘Dying At Home’.