No one has to die alone

We are all afraid to die to a certain extent, even though we all recognize that we will die. Having worked for over15 years in palliative care, I have noticed that what people tend to be afraid of is the dying process more so than the actual moment of death. Fear of pain and suffering, fear of the last irreversible change, fear of separation and loneliness, and fear of loss of dignity and control are the most common reactions once the reality of mortality hits close to home.

In times of COVID-19, these fears are joined by the horrible thought of having to die utterly alone, due to no visitor protocols of almost every hospital, hospice, and nursing home. Even though all those institutions will make exceptions in their no visitor policies in times of severe emergency and death of non COVID-19, patients, COVID-19 positive patients do die alone… this thought alone seems to be worse for us, both as family members and as medical staff than the thought of death.

We cannot change some of the policies that are there to protect the lives and health of those around us. But we can adjust to how we deal with the death of a patient or loved one in a COVID 19 room. What I list now are no perfect answers but just a few things to think about

For family members:

  • See whether you can call into the patient room via phone, iPad, video conference, etc. if this technology is available. You may not be able to be physically present, but your voice can still be there. Being on the other and of the phone, close your eyes and tell your loved one everything you need to say. Even if they may be in the stage of being unresponsive from a medical view, hearing a loved one’s voice (even if they cannot answer) is the sense that is there until the last moment and maybe beyond
  • Ask the medical staff if there is a way to put on music in the room, a favorite song, a favorite radio station, a TV show, etc.
  • Send pictures to the hospital and personal items that can transform the room into something closer to home. You may not be able to enter, but a favorite blanket, the picture of the last family meeting, the childhood teddy bear, etc. can.
  • If you cannot be there via modern telecommunication, take the time wherever you are to sit and be present. Be calm, allow your feelings, but focus on your loved one. The connection we feel to one another is so much stronger than physical separation. Make the “I think of you, I am there with you in spirit/prayer/thoughts” a reality. Being connected that way goes beyond words and physical distance… it matters.
  • If you need to consider what to say or think about, think along the lines of: “I love you, I hope you love me too, I forgive you, please forgive me, and I thank you, you will always be with me”.

For staff:

  • Even with protective gear, spending a moment of holding someone’s hand is powerful.
  • Allowing family members and friends to make the connections described above can be vital to someone’s fear being eased and finding peace.
  • Encouraging family members to make those connections when they are so afraid or in despair that they may not even know what to think, shows how much you care
  • Assuring family members that, you are not just the medical staff member, but you will try to be part of the patient’s hospital family, can be powerful and reassuring.
  • Taking, if possible, extra time to listen and be present, to hold, to laugh and to cry with the patient and family, is what will make us hospital family for them.

We cannot avoid that people will die without their loved ones being physically present, but we can avoid that people die alone…

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  1. Why is that people fear death despite the fact that it is a certainty for each and every one of us?
  2. Even without knowing what lies beyond death (the unknown), why are people still fearful of death?
  3. Is it at all possible that the unknown itself could be something quite pleasant?

These are not easy questions to answer and even philosophers and psychologists have failed to reach unanimous agreement. The philosopher Plato (427-347BC) presented key points from Socrates’ argument about fearing death thus:
“To fear death, gentlemen, is no other than to think oneself wise when is not, to think one knows what one does not know. No one knows whether death may not be the greatest of all blessings for man, yet men (including women) fear it as if they knows what one does not know.”
Lawrence
+256705347349

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Great questions and great quotation.

In my experience working with people facing mortality and death, the fear of the unknown, the fear of suffering and the fear of disconnection (either ultimate or temporary) from loved ones are some of the main topics. Just because we know something will occur, does not necessarily mean that we are not afraid. And death is still for many the biggest unknown - people tend to be afraid of the unknown, since often it pushes them out of their comfort zone of what is familiar and what they can control. Giving up control is hard, even though it can be freeing. A mindshift from fear of the unknown, to embracing it as a safe possibility or safe reality is not easy for everyone.

People feel what they feel when they are vulnerable, especially towards the end of life. Some are relived, resilient and open for whatever comes, others are fearful and in despair, many are in a mixture of all of those and many more.

Hopefully for our patients and their loved ones, it can be a mixture of positive and tentative emotions. Still the fear and vulnerability, are the main reasons for any palliative care professional to come alongside and be a guide on the ultimate way, be that in medical, emotional, practical or spiritual ways.

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