Tag Archives: End of life

Five ways we can support people at end of life


Here at Macmillan, we’re supporting Dying Matters Awareness Week (8th-14th May). It’s an important opportunity to talk about dying, death and bereavement and how we can support people in such times of need.

This year’s Awareness Week poses the question ‘What Can You Do?’

We know that everyone dying from cancer will have different experiences at different times. Reaching the end of life can be very difficult and may create many practical and emotional issues for those affected to work through.

Our focus is on making sure the right care is in place so everyone’s individual needs can be met.

Let’s look at what Macmillan can do right now for people who are nearing the end of their life.

  1. We can help people to find practical and emotional support at the end of life and through bereavement

Our Information and Support Services provide people with face-to-face assistance in every Trust’s cancer units. We also have free information and advice available online, through our Macmillan Support Line, in public libraries and elsewhere in communities.

  1. We can help our Macmillan Professionals develop the skills needed to provide high quality care

Having the right cancer workforce in place is a priority for Macmillan and we have more than 170 professionals working in hospitals and communities across NI. Many are directly responsible for providing end of life care and support to people affected by cancer. Some examples are our specialist palliative care nurses, GPs and various Allied Health Professionals. All our healthcare professionals are provided with opportunities to learn more about how to meet the needs of people affected by cancer at different stages.

  1. We can enable more people to use Advance Care Planning to record their wishes about how they receive care

Having an Advance Care Plan means that health and social care professionals will know what’s important to the individual and can make appropriate decisions. We have worked with the Public Health Agency to create ‘Your life and choices: plan ahead’ which is a booklet full of information on how to record your wishes.

  1. We can use our Community Palliative Pharmacy Project to help more people at the end of life stage to cope at home

This two-year project is underway right across NI. We have a Service Improvement Pharmacist in every Health and Social Care Trust, liaising with staff across the whole area including community pharmacies. This helps to ensure they have the right stock and training to address any issues. The project also aims for better quality of life for people receiving end of life care by avoiding unnecessary hospital admissions. We know that care at home is what most people would prefer and will continue seek new ways to make this possible.

  1. We can influence wider work to improve palliative and end of life care

Macmillan contributed to the development and implementation of the Department of Health’s Living Matters, Dying Matters strategy (2010-15). This is the most significant policy relating to end of life care to be created in NI in recent years. We now want to see new policy developments for ongoing progress in end of life care and patient experience. We are calling for a new dedicated cancer strategy for NI, including improvements in the quality and availability of personalised end of life care.

We know that too many people still lack access to appropriate end of life care and support. Right now, cancer is the cause of more than 1 in 4 deaths in NI. With more people being diagnosed than ever before, the need for high quality, personalised care will increase.

No matter which party takes responsibility for health and social care when the current political uncertainty ends, there’s no doubt that dying matters. Palliative and end of life care must remain high on the agenda and strategic decisions will be needed to ensure the right services are in place in the future.

Advance care planning gives us some control over our future

For the past 10 years, Dr Graeme Crawford has worked as a Macmillan GP Facilitator in the North Down and Ards area of the South Eastern Health and Social Care Trust.

Graeme Crawford at desk

I am part of a Palliative Care Team involving a Consultant, specialist nurses and Allied Health Professionals (Physiotherapist, Occupational Therapist, Speech and Language Therapist and Dietician) who meet to discuss patients with palliative care needs. We also provide training to our professional colleagues in palliative and end of life care with an emphasis on forward planning to ensure a high level of care for patients and their carers.

My work has involved promoting advance care planning. This is a valuable tool for helping ensure those people who are approaching end of life with cancer and other life limiting illnesses are involved in decisions about the care they receive.

Advance care planning is used to help health and social care professionals act in accordance with the wishes of a patient who has lost capacity (when their condition has worsened to the extent where they are no longer able to make decisions or communicate their wishes).

Making plans about the future is important for anyone who is living with cancer or any other long-term condition. It is never certain how an individual’s condition will progress, or for how long they will be able to retain control of their decisions about what care they receive and where they receive it. I would also encourage anyone who does not have an illness to think ahead and consider making an advance care plan.

Unlike some other options for planning ahead (such as an Advance Directive to Refuse Treatment or Enduring Power of Attorney) an advance statement is not legally binding and is free to make. It is a voluntary process of discussion and review to help an individual who has capacity to anticipate how their condition may affect them in the future. If they wish, they can then set on record choices or decisions relating to their care and treatment and have the option of changing these later. In the event that the individual’s illness progresses and they lose capacity, professional and family carers can refer to the decisions recorded. The advance care plan will only be used if the person loses capacity.

Many of us are reluctant to consider a plan, hoping we will not need it. Illness may arise unexpectedly, as in cases of stroke, or gradually take away our ability to make decisions, as happens with dementia. Talking about the future is something we can all find difficult but planning ahead can have many benefits. It can initiate important decisions with family members, helping avoid later disagreements and reassuring family members that their loved one’s wishes influenced their care.

Macmillan and the Public Health Agency have published a free booklet “Your life and your choices: plan ahead”. It provides information and forms to help with various aspects of advance care planning, beginning with who to raise the subject with and what to say. People can refer to it for information on making a will, creating enduring power of attorney, organ donation and funeral planning.

If we record our wishes it is more likely that we will get the care that’s right for us. It gives us some control over our future.

Watch Evelyn’s story on our Macmillan NI YouTube site