Dying is hard. Even for Nelson Mandela.

As I listen to the varied reports about Nelson Mandela’s declining health, I consider the challenges of dying with chronic illness. I consider the challenges of dying in a hospital setting.

When people die with chronic illness, they may be on “death’s doorstep” several times before they actually die.  This can give such a feeling of uncertainty… after death has been challenged a number of times, it can seem like medical interventions can continue to win over death. One might know that death will happen, but it may not seem real.

The reality is that all of us die eventually.  How do we know when death will happen?  And how do we know when to stop the acute interventions that at one time seems to prolong living, but at another time seem to prolong suffering and prolong the dying.  And, how do we know how to best make the decisions if/when the person who is dying is not able to speak for themselves?

It is hard to be family. It is hard to watch this process of decline.  It is hard to watch loved ones die. And I am sure that it is especially hard if your loved one is such a public person, such  a leader and so revered as Nelson Mandela.

Nelson Mandela once said that education was the most powerful weapon to change the world.  I wonder about the role of education in preparing Mandela and his family for his dying process. Has the family had the information needed in order to make decisions that Nelson Mandela would have wanted at this time?

While I do NOT know the cultural context, or the hospital culture where Mandela is a patient… I suggest two seemingly simple topics/questions to discuss with family may help the family to see what is happening, and help them to consider their loved ones wishes when death is near.

1. It can be helpful to ask the family, “tell me about your loved ones condition over the past year, months, weeks, days. Give me just snapshot view into his/her condition over this time.”  As the family describes the changes, they may reflect on changes in activity, strength, intake, self care, level of consciousness. Then after reviewing this themselves, they may be able to say, “Hm… if this is how he has been declining in the last year, then if he continues in this pattern, it looks like he may die in the coming weeks or even days.”  With that information, they may be able to refuse treatment that appears to be futile.
2. “What would your dad have wanted if he were having this discussion, determining what care was best for him, if he six years ago, six months ago… if he was alert and lucid? What would he have wanted?”  From this perspective, family may feel less like they are determining the plan, and may feel that they are more able to let their loved ones decide what to do.

In addition to discussing these topics, I would hope that the health care team, or the medical team, would help family understand that infection is the most common cause of death. That most people ultimately die because of infection. Chest infections are the most common.  Bladder infections are also common. Infections may occur because the other illnesses cause a weakening of the immune system, and the body may be unable to fight the infection, unable to support the antibiotics to do their work. This information may help family to understand that if their loved one has repeat infections, and if the repeat infections do not respond to antibiotics, it is possible that the immune system is no longer able to help the body recover.

As a hospice palliative care nurse, I am sure I join the many thousand in the hospice palliative care community who hope that Mandela and his family have had the support of a wonderful hospice or palliative consult team. I know how conversations with a hospice doctor, nurse and social worker can help families prepare for and provide space for a comfortable, peaceful dying process.  I hope that they know that integrating hospice palliative care principles and practices can help provide comfort, and can be as effective as acute intervention, or more effective than acute intervention in helping manage symptoms associated with infections.

And finally, I hope that Nelson Mandela has found peace, meaning, and value in this time of life.  What a great man.  May he be blessed with peace.

My prayers and thoughts go out to family and all those whose hearts are filled with grief at this time.

Kath