The final days of life should be simple, comfortable, and spent in the least possible pain. It’s a sensible sentiment, though not one that necessarily aligns with reality when facing a life-limiting illness and making decisions about potential treatments through end of life care.
A new study finds that the factors of comfort and control are more important to most patients with a terminal illness than the potential to fight it out in hospitals or other medical facilities that focus heavily on treatment. Published in the American Journal of Geriatric Psychiatry (AJGP) in March, 2016, the study casts light on a topic that has long defined a fundamental difference between doctors and the palliative care community: when should handling a life-limiting illness move from cure to care?
End of life care: To Treat or to Comfort?
Perhaps unsurprisingly, a majority of the people surveyed said they would find more control in their home environment than in a hospital setting. Despite all the advantages offered by a full medical facility, the atmosphere is one of handing over care decisions to doctors. The results naturally tend towards treatment, because the professional drive is to heal, rather than to help someone to accept death.
While exploring the full range of potential cures, however, there will always be a time when the patient, family or friends need to say enough is enough. In some cases, the pain of some treatments is simply too much to justify the limited chance of success. That’s where end of life care comes in and where the focus on comfort starts to take precedence.
Of prime importance at this time is a comfortable environment. Usually this means a location that the patient likes, which allows them to be near to those he or she loves, and with access to them when it’s wanted, rather than limited by visiting hours. It means having emotional and spiritual needs met more than medical treatments, although it should not preclude consideration of the latter if a new option arises. In most cases, however, by the time end of life care is accepted, the patient is mentally at peace with their condition.
A case reported in Missouri by Fox 4 News exemplifies the findings of the study. 102-year old Treva Armstrong, who had limited time left with her family due to advanced pancreatic cancer, chose to remain at home and reveled in the extra days she felt it brought her.
She sumed up the benefits of homecare concisely, saying: “Well, this is home. You’re just more satisfied at home than you are anywhere else.”
Defining a “Good Death”
While it is difficult to wrap our heads around casting the concept of death in any kind of positive light, the study’s subject is of course relative. Facing life-limiting illness, death becomes a more matter of fact topic, around which the discussion turns to how and where, rather than the uncertainty of why and when.
The study explored 36 peer-reviewed research papers, each of which made some attempt to define what we consider to be “a good death.” Some of the core themes identified were:
- An experience free from pain.
- A preference for a specific way to pass on.
- Religious, spiritual, and emotional well-being.
- Achievements in life and continuing quality of life.
- Preferences for – and limitations of – treatments permitted.
- Passing on with dignity, in the company of friends and loved ones.
Patients overwhelmingly placed a particular form of dying atop the list of important considerations, with 94 percent of those reviewed mentioning this as a high priority item. Ensuring as close to a pain-free experience as possible came next, with 81 percent of reports mentioning this as an important matter.
In addition to patient opinions, even family members, who can understandably lean towards extending life and keeping loved ones close to medical professionals, were found to prioritize dying with dignity and maximizing quality of life.
Even as doctors discuss treatments more than comfort-focused care, this limited study is enough to remind us that there is always a point at which the patient and family should take control.
When the discomfort becomes too much or the risks from treatment too great, those suffering and those who care for them must be able to ask enough questions to open all avenues and explore end of life care. Most hospice providers offer in-home options, so finding a hospice provider near you to ask such questions is a good first step.