Death is a natural and inevitable part of the life cycle. We will all experience death, but we don’t like to look at, contemplate or talk about it, especially our own death. And even when we do prepare for it, when that final period arrives, having guidance and support throughout the whole process is indispensable.

A terminal diagnosis is something no one wants or plans to receive. I know this because I have first-hand experience working as a nurse practitioner in Oncology for over 20 years. Many of those years were spent in Neuro Oncology, where even a benign tumour can confer a terminal diagnosis. I would say that 99.9% of the time, whether the bearer or recipient of the news, there are few words to describe the difficulty of those conversations.

I hope to offer some practical suggestions from a healthcare perspective during this almost surreal time for the dying person and their families and friends, based on my experience in the United States. The provision of healthcare in the United States can be very different from other parts of the world, and while the mechanics of health care systems may vary, the physical, mental and spiritual processes experienced are much the same throughout the world, across all age groups and a multitude of disease processes. 

The probability of receiving a terminal diagnosis varies from disease to disease and person to person. Some diseases/illnesses are acute in onset with a rapid decline, while others can be more chronic and insidious in nature. In either case, the news of the approaching end of life is never welcome. 

The other point that is undeniable is that the final phase of life does not just happen to a “patient”. It also affects their family, friends, their community and the health care providers with whom they develop a trusting relationship to help guide them throughout this most vulnerable time in their life. Therefore, these recommendations not only apply to the dying but also to their family and friends.

With these initial thoughts in mind and the implicit understanding that health care providers must respect the individuality with which each person chooses and proceeds to live the last phase of their life, I offer some suggestions based on what I consider the cardinal themes to achieve an optimal outcome at the time of death, they are communication and support.

Communication

Clear communication is essential during the stressful end of life period by both providers and patients, regardless of whether this is a diagnosis that comes from out of the blue or is somewhat expected after a long illness. The setting for this encounter is usually a clinic or hospital room. I offer some ideas to help maximize communication during that first encounter. 

When you make the initial clinic appointment or have a hospital visit try to make sure there is sufficient time to hear and discuss the information. Many times a family member makes the appointment for this first discussion. Try to minimize interruptions and distractions. Close the door, turn off pagers and phones, etc. Whenever possible, have a family member or friend with you at this visit (and other visits as well if they are able to accompany you) for support, to write down important information and to help with questions and clarification. Many people these days like to record the visit or have a family member join in on a FaceTime or WhatsApp conversation. Usually, this is not a problem, but it is best to ask in advance, as not all health care providers allow this. 

At this first visit, patients and families often only hear about 5-50% of the conversation once the word terminal or incurable is introduced. Providers expect this. Don’t hesitate to make another appointment to review and clarify what was said during the visit. Sometimes it is best to go home, take the time to regroup, take in what was said and write down your questions before returning for clarification and making decisions about possible treatments, no treatment and other considerations. 

If there are possible treatments or further treatment for a progressive disease, more tests may be requested prior to any decision-making. This can be a good time to find out about other resources available to you through your health care system and community resources. Some examples may include clinical trials, alternative, holistic and complementary therapies, Palliative care, Hospice care, pain resources, nutritional support, home care resources, caregiver resources, financial and medication assistance, etc. Often, there is a social worker who can help identify these in addition to your health care providers (doctor, nurse practitioner, physician’s assistant, nurse).

If not already done, this is the time to make practical arrangements for the end of life. These can include a will, durable power of attorney (DPOA), durable power of Health Care (DPAHC), custody arrangements if needed, update beneficiaries for financial accounts, pet custody, and specific end-of-life wishes. (In the UK, they are Lasting  Power of Attorney for Finances and Lasting Power of Attorney for Welfare)

While not all of these items can be undertaken at this time, it is helpful to work on them earlier rather than later during an illness to minimize any untoward repercussions for everyone later in the process when physical and cognitive symptoms can impair the ability to complete these tasks. Better yet (though most people do not do this) is to consider all of these practical “business” items while you are young and healthy to avoid unnecessary anxiety when a terminal diagnosis appears. After my children turned 18 and I was no longer legally in charge of them, and because traumatic deaths in the US are a leading cause of death in young adults, for many years, I put a DPOA and DPAHC in their Christmas stockings, encouraging them to fill them out! After you are of legal age, you are never too young to consider taking care of these items, even if in the most basic way.

These are initial things to think about surrounding the initial encounter, rendering a terminal diagnosis, but communication should be an essential ongoing process throughout the terminal phase of life. In many ways, good communication during this period is like a dance; sometimes one person takes the lead, other times another.  But at all times, everyone is working toward mutually agreed-upon goals for the benefit of the dying person.

The time duration at the end of life for a dying person can vary greatly depending on the disease, comorbidities and other factors. It can be as short as weeks, maybe years, or perhaps somewhere in between. Prognoses are often given, but these are based on statistical groups of people and can vary for a particular person. Therefore, it can be a useful piece of information to inform one’s actions during this last part of life. Everyone has certain beliefs, ideas, and things important to them at this time in their life. It is important to communicate these wishes. Some people want to be with family, others like to travel, some concentrate on spiritual practice, and for many, a combination of all of those. And some are too ill to do most of those. Proceed accordingly.

Support

Support after receiving a terminal diagnosis comes in many forms. The previous discussion focused mainly on physical and practical advice after a first encounter with the medical team. But there are many other supports to consider, and one very important one is support for mental health, which invariably is affected during this time. 

Many decades ago Elizabeth Kübler Ross wrote a book called On Death and Dying which introduced the five stages of grief; denial, anger, bargaining, depression and acceptance. While not everyone goes through all of these stages, almost everyone experiences some of them. This also includes family and friends of the dying person. Often, a social worker is the first person encountered to address a dying person’s emotional health. They can help connect people to mental health providers to deal with anxiety and depression that can accompany a terminal illness. Many times, people have pre-existing mental health issues, and the healthcare team may need to adjust and/or change medications that may interfere with treatments. Expecting good and challenging days emotionally can be expected, and you should be encouraged to reach out for help during those times. For others without previous mental health challenges, short-term and sometimes long-term antidepressants and anxiolytics can be helpful. 

Spiritual practices are often helpful for people. Many have an established routine practices, but many do not. For most people, encouraging and facilitating a referral for mindfulness meditation is quite beneficial.

There are many other therapies that assist with emotional release and expression and may include music therapy, art therapy, storytelling, hippo therapy, physical exercise, yoga, writing therapy and others.

I always encouraged people to investigate Palliative care after receiving a terminal diagnosis. While some people may not need these services initially, having developed even a beginning awareness of this service can be extremely helpful when eventually needed. They can also help with a seamless transition to Hospice care when the time arrives.  Family and caregiver support are also essential. Referrals can be made for counselling, respite care and multiple other supports. Caregivers are often overlooked but need ongoing support, especially for illnesses of long duration.

In summary, I have highlighted numerous things to be considered when one receives a terminal diagnosis. I hope you can appreciate the complex interdependence of so many individuals and groups of people to optimize this experience for the dying person, their family and friends. Whether the anticipated time until death is short or long, there is much to ponder. The smoothest transitions during this period work like a bicycle wheel. The primary medical team is the hub of the wheel, and the spokes are all the arms of support they reach out to while it moves synchronously down the road. Everyone travels this route in a different way, and by utilizing good communication skills and supportive services, we can fulfill in a respectful and dignified way a dying person’s wishes in order to achieve a peaceful death.