Design your end-of-life support team

Creating a care support team will ensure you are looked after well

Creating your perfect end-of-life support team is the greatest gift you can give yourself.

We didn’t come into this world alone… at the very least, our mother was there. And we don’t need to leave this world alone either. With the right team around us we can live the best possible life right to our final breath.

People who have had the benefit of a support team when their loved one is dying report that it enriched the dying person’s and their own quality of life significantly during that time.

There is a medical support team that will be drawn into your life automatically when you are diagnosed with any illness, and it gets proportionately larger in relation to the seriousness of the illness. For example, if you are diagnosed with a terminal illness, depending on what it is, your medical support team could consist of some or all of the following:

Primary care doctor (GP), RN, nurse practitioner, specialist, therapist, social worker, case manager, admitting team (if you are hospitalised), staff physician or nurse at your aged care or assisted living facility, palliative care specialist, radiologist, oncologist, chemotherapy nurse, surgeon, nutritionist or dieticians, occupational therapist or physiotherapist.

So the team to support your medical needs will form itself from the medical system, but you will be the one to create your physical, emotional and spiritual needs, because only you know what you want and who will be best for you.

Physical needs

This team may consist of your Enduring Guardian, Enduring Power of Attorney, Person Responsible, hospice and palliative care volunteers, someone to drive you to appointments, do your shopping, cook meals, clean your house, change your sheets, do your washing, administer prescribed medicines, chop wood, take books back to the library… every conceivable task that you would normally do for yourself when you are fit and well.

Something to consider: we have a birth midwife to help with our delivery into the world, and we can have a death midwife (doula) to help with our delivery from this world. These wonderful people will guide and support you through the journey to help you to feel safe and supported on that deepest level.

Emotional needs

This team may consist of a counsellor, social worker, psychologist or psychiatrist, compassionate friends or family members, friends from your local community groups, support groups or work associates.

Spiritual needs

You may call in a minister, pastor or spiritual advisor; someone to read the bible, prayers, poems or other discourses to you; someone to bring your rosary, crosses, candles, crystals and other images/icons that help you feel connected to your spiritual hearth.

If creating the perfect end of life team sounds daunting, choose one person whom you feel can assist you to create the perfect group of people who will lovingly support you and your loved ones through this precious and precarious time. They may approach people on your behalf, can create a roster to make sure everything runs smoothly and monitor visits so you aren’t inundated with visitors/supporters. Having that one ‘team coordinator’ who oversees things and whom members of your support team can contact (and vice versa) will take the load off you and your family and allow you time to get on with the important task of living well right until the very end.

Your team may be small and intimate or large and active, depending on your needs and personality, but what’s most important is that every member of your should team know exactly what your life and spiritual values are and what constitutes a quality of life for you so they can support and serve you in reaching your goals. And the more team members who communicate to each other and know your end-of-life medical, personal and spiritual choices, the more they will be able to support you.

Great links: Caresearch Palliative Care Knowledge Network

Note: This Dying Well portal is designed to assist people to live well right through to the NATURAL end of their life and shouldn’t be confused with euthanasia groups or websites. However, the NSW Dying with Dignity web site has a great list of support group contacts for a broad range of social, mental and physical wellbeing issues. It’s the most comprehensive and user-friendly list I have seen to date, so I recommend you access it if you are looking for a support group.