The Most Common End-of-life Experiences

The Dying Process From Different Temporal and Cultural Perspectives: It all goes back to Communication and Values.

Key takeaways:
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    Receiving a terminal diagnosis, transitioning from curative to palliative care, to hospice care, and actively dying is a process that can take months to years.
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    How families and patients experience the dying process is informed by culture and values.
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    Families and patients need to understand the physiology of the dying process, as well as the practice philosophy of palliative and hospice care and its limitations.
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    Careful, respectful, and caring communication from care providers with families can help clarify goals and allow families to avoid a “bad death” and successfully transition.

One of the unique features of the human species is that we appear to be one of the only creatures that are aware of its mortality, which, some developmental psychologists have argued, tends to color how we conduct our lives and relationships - with a sense of the finiteness and at times, foreshortened future ahead of us.

For most of our lives, we can do that uniquely human thing where we and those who love us can live life, on some level, aware of our mortality but also not spending much time worrying about it – until a terminal diagnosis happens.

Viewed in this light, the “dying process” from the perspective of families and patients starts many months, potentially even a year or two out from the actual event of dying.

As the months draw into weeks, days, and then hours, the perspectives and relationships of families and patients with each other, with their carers, as well as doctors and the medical system – all change as the event draws ever closer.

Receiving a diagnosis of a terminal disease

Simply having a so-called terminal illness doesn't necessarily preclude living for quite a long time after the disease process is identified. Many incurable diseases that are likely to end one's life often function as chronic illnesses which can persist for months, if not years, rather than death sentences.

In this case, success is measured by the degree to which one successfully copes with and manages the chronic illness experience of living with a terminal disease rather than simply taking this as somehow the end-of-life.

This, of course, describes the overall philosophy of palliative care as a clinical specialty – or, as the World Health Organization describes it, “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with a life-threatening illness.”

For the most part, we won't be addressing this issue in this article, mainly because simply having a terminal illness isn't the same as being at the end of life.

Cultural origins and perspectives can often greatly color how families and patients alike treat their first encounter with a terminal disease diagnosis. For some, after the initial reaction to an initial terminal disease diagnosis, depending on how the initial offer of palliative care services is delivered, there may be interest in this kind of approach, but for any number of others, their values may align strongly with “fighting a good fight,” or pursuing a cure at all costs.

African-American families may be particularly resistant to the idea of palliative care, particularly at this early stage, given historical suspicion of the medical system as perhaps holding the view that they are expendable (e.g., such as in the infamous Tuskegee experiment).

Other families may have other reasons to be suspicious of palliative care approaches, seeing it as being against their values.

Regardless, it's good to remember that palliative care and the pursuit of life-extending treatments (even attempts at cure) can potentially coexist in the same overall treatment plan. So, this should simply be an ongoing conversation with one's provider or care team.

The last 6 months of life & the introduction of hospice care

Whether a terminal disease is a few months to a few weeks out, it is the process of agreeing to actual hospice care (or not) that is the most stressful for a family.

In the United States, you can access specialized hospice care services if you are certified to be in the last six months of life due to an identifiable life-threatening condition.

By being formally enrolled in a hospice care program, you're able to then utilize the services of specialized multidisciplinary care teams covered by most insurance.

Although it's not precisely clear where the six-month rule came from, it could be because once you get outside of a few weeks to a few months, the accuracy of physicians' ability to predict the demise of terminally ill patients tends to drop significantly.

Once you get within a week or two of illness, particularly when “near misses” of a week are allowed, physicians' judgments about imminent death become accurate to levels approaching 90%.

One of the misconceptions families and patients have about hospice care is that if you enroll in hospice care and you manage to outlast the six months, the benefit “runs out.” However, in many cases, if a hospital medical director recertifies a patient, they can continue to receive hospice care.

The final days and hours – actively dying

This is what most people think of when they think of dying – it's the relatively short time where the body goes into the process of “total body system failure,” or “period of irreversible functional decline in functional status before death.” This period takes place over 24 hours to around two weeks.

One of the first noticeable phenomena in patients and families is a growing disinterest in food and eating, which may start with tolerating only small meals and move on to refusing food and drink.

This can be very distressing for families – for most of us, the offering of food and drink is an expression of love and caring.

This distress can sometimes lead to families demanding invasive procedures like placement of feeding tubes which often do little to extend life, or intravenous liquids, which, due to lack of nutrition leading to tissue and protein loss, can result in so-called “third-spacing,” or the leakage of fluids into the extracellular spaces.

All of this is very difficult for patients and, particularly, families to accept, depending on their beliefs or where they are in their stages of anticipatory grief.

As internal organs like the kidneys shut down, urinary output slows, but also, depending on the disease process involved, either urinary, and bladder incontinence is observed or bowel constipation which requires palliative management.

The circulatory system begins to shut down as well, which leads to lowered body temperature and a clammy feeling in the extremities, as well as the aforementioned appearance of cyanosis.

Physiologically, lots of things happen in the final hours before dying, although they seem to follow a predictable pattern in terms of the physiological stages, with an end-stage alteration of consciousness (AKA 'terminal delirium') to observations of a so-called death rattle, to the phenomenon of “respiration with mandibular movement” (or RMM – which refers to the dropping of the jaw when one breathes), and then finally, to cyanosis, or bluish coloration of the skin.

By this time, the phenomenon of emotional withdrawal is likely observable, which, combined with the decrease in alertness and consciousness, can seem like the patient isn't, at times, even conscious. At other times the patient can be agitated and hyperalert.

Hallucinations are often observed – and often in the clinical realm, we observe patients reporting seeing long-dead family members or parents and may interact with them as if they are in the room with them. They may find this comforting – as does the family.

The ethics of dying from a cultural perspective

The struggle that patients and families undergo with the “ethics of dying,” as it were, is no more visible when it comes to struggling with the final issues relating to, for example, withdrawal of life-sustaining treatment (like feeding tubes) or the use of palliative sedation.

Ethical quandaries in medicine are ultimately about values, and much like the questions as to whether to sedate someone for what may be primarily existential suffering or withdrawing tube-feeding from a person with severe advanced dementia or even a persistent vegetative state,

These are not questions that a medical provider or medical team can answer on their own, and answers to how care can be rendered are only ultimately realized in the communication and trust built between providers, patient, and their families throughout the dying process.

For example, as was mentioned above, withdrawal from tube feeding at the end of life can be experienced by some families as a humane and caring thing.

For others, it’s unquestionably torturing the dying person or denying them a “good death.” The same issue goes for palliative sedation – for some, being able to progress in the dying process with alertness and awareness as intact as possible, both for families and patients, is of the highest value – while for others, it’s unthinkable and a source of great anxiety and may be viewed almost as torture.

In the case of palliative sedation, the medical ethics of beneficence (e.g., to not harm) also are potentially difficult to square against the wishes of patients, who may be terrified and anguished about dying.

But – there are ethical guidelines that walk this line, and as long as the line between palliative sedation and hastening death is carefully walked by the medical provider, palliative sedation is a viable option that can reduce suffering and provide comfort to the family through the dying process.

Regardless of one’s ethnicity, culture, or values as a family, when dealing with the dying process, there are thorny and difficult issues with death that, if careful and caring communication between the provider, patient, and family does not occur, could lead to a “bad death” and potentially trauma for family members years after the event.

With the advent of the modern palliative and hospice care movement there are now many options for how to address the dying process, whether it is within the perspective of “fighting the good fight” and pursuing a cure until the last breath, or embracing a full palliative/hospice “comfort” approach as a terminal disease diagnosis comes to light and progresses to its final stage.

Fortunately, as long as caring, skilled, and communicative providers in this field exist, this means there are options available.