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End-of-life care: It's in your hands
Quality of life matters
People are taking more responsibility for their own health, well-being and quality of life. But what about responsibility for quality of life as they fight acute conditions or near the end of their life? Thanks to advancing technologies, many of us are living longer than ever — but due to the rise in lifestyle-related diseases such as diabetes, we’re often having a shorter ‘healthspan’ (years lived free of disease).
There is a growing belief that personalised health care should extend to personalised
end-of-life decision-making. If you’re faced with unnecessary suffering and a deteriorating quality of life, having choices over when and how you receive palliative care or die become very important.
Palliative vs. hospice care
You may have heard of hospice care — a catch-all term for end-of-life care provided by health professionals and volunteers. This usually focuses on ways to make a dying person comfortable and alleviate pain without life-extending technologies. A more encompassing approach is palliative care, which improves quality of life for people facing both life-threatening and non-fatal, life-limiting conditions. This type of care focuses on pain prevention and relief from suffering while addressing the person’s physical, social, psychological and spiritual needs holistically.
Until the 20th century, people typically experienced what was considered ‘a dignified death’ at home. But today, people in many industrialised countries often experience a prolonged, machine-assisted death in hospitals or nursing facilities. Palliative care can offer a balance between today’s clinical expertise and the compassionate care of old. Even then, the care facility may not provide individuals with the experience they want at such a critical time in their lives.
Overcoming barriers
As individuals and collectively as a civil society, we need to rethink how we die. Throughout the world, approaches to end-of-life care vary widely. Some of the barriers to quality care include medical professionals’ lack of training, discomfort with discussing death, and a sense that all efforts must be made to prolong life regardless of suffering. Cultural norms, prohibitive laws and restrictive regulations combined with inadequate access to affordable pain relief medications and treatments can complicate the problem.
You may face some of these barriers yourself because of your upbringing or where you live. But committing to having these conversations with your family, friends and doctors moves you one step closer to being able to chart your own palliative care or end-of-life path.
Our mission of care
At Aetna International, it’s our mission to reshape health care across the globe by helping improve the quality, affordability and accessibility of care at every stage of life. We raise awareness of critical health challenges facing the world and promote effective, value-based care solutions, such as Aetna’s Compassionate Care programme in the United States.
Envisioning the palliative care and end-of-life experience you want
1. Start with a plan. Where do you want to be when you’re no longer independent? What do you want in terms of medical intervention?
2. Choose a medical decision-maker. Making sure your wishes are followed can be difficult due to cultural pressures, local laws or regulations, and access to the right resources. It can help to ask someone you trust to serve as your medical decision-maker or advocate. The person should know your medical information and be available when you need them. They should also be willing to ask doctors hard questions, follow your wishes and do what’s best for you. Having more than one advocate increases the odds that your wishes will be followed.
3. Consider caregiver options. Think about whether you would rather stay at home with palliative or hospice caregivers by your side or choose an elder care community. Some communities offer a range of living options as you age, with independent living available while you’re still in relatively good health, assisted living options when needed, and hospice care for end-of-life comfort.
4. Be ready for the unexpected. Life involves risks and surprises. You never know when you might be hospitalised or unable to make life-defining medical decisions on your own. That’s why it’s always good to have on hand:
- A one-page summary of your medical history, including current conditions you’re managing and medications you’re taking
- A ‘Do not resuscitate’ directive that lets doctors and medical staff know whether you want to be kept alive on artificial life support systems such as a ventilator or not
- A living will that specifies what you want to happen if you are in a vegetative (brain-dead) state, approaching the end stages of non-reversible disease or facing other medical circumstances that prevent you from expressing your wishes
Don’t forget to store these documents in an easily accessible place and give copies to your advocates. For more information, contact your primary care doctor or medical professional.
Documenting your wishes in the event of a health care emergency, situation that requires palliative care requirement or in the event of your death is an important part of your broader health care considerations. It becomes particularly important if you’re going to be living abroad, away from family and surrounded by an unfamiliar health care system and culture. For further reading on the subject, download our white paper:
Further reading:
A dignified death: Realising the promise of living wills and palliative care
“It’s critically important to engage with the patient, the caregiver and the family much earlier than the time when the patient’s clinical condition is deteriorating.”
