Rights of the Dying

I want to share an important writing from David Kessler’s book, “The Needs of the Dying.” Kessler is one of the leading voices helping us understand the psychology of grief, loss, and death.

As you read through these, I want to witness and acknowledge that they may feel very personal. Maybe you’re knowingly very close to death, or you have someone precious approaching that threshold.

To the Dying: I’d ask you to receive these with a confidence that your reality now is very important, and that you have a right to feel frustrated when these are violated. You have a right to expect these from your medical team and the professionals you interact with in this flurry of change and hard conversations.

To the Caregiver: You are a reliable, persistent, loving human. Not that you need it, but if you want it: You are forgiven for the times you just couldn’t do everything and meet all of these as you gave yourself for your loved one. You need support too. You deserve support. There is no caregiver who loves and advocates perfectly. Please receive these with confidence that your instincts are strong, and that— along with caring support— you are what your loved one needs. You’re doing great.

The Rights of the Dying

The right to be treated as a living human being.

The right to maintain a sense of hopefulness, however changing its focus may be.

The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be.

The right to express feelings and emotions about death in one’s own way.

The right to participate in all decisions concerning one’s care.

The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one’s needs.

The right to expect continuing medical care, even though the goals may change from “cure” to “comfort” goals.

The right to have all questions answered honestly and fully.

The right to seek spirituality.

The right to be free of physical pain.

The right to express feelings and emotions about pain in one’s own way.

The right of children to participate in death.

The right to understand the process of death.

The right to die.

The right to die in peace and dignity.

The right not to die alone.

The right to expect that the sanctity of the body will be respected after death.

Reprinted from

“The Needs of the Dying” by David Kessler

Harper Collins Publishers (1997)

Are there any of these that felt revolutionary to you? For me, “The Right Not to Die Alone” was eye-opening. The right not to die alone is one I had really taken for granted until the pandemic.

I had a friend die from Covid during one of the early months of the pandemic — when family members had to say goodbye via video chat. She was a formidable, energetic, thoughtful woman, and I spent hours just imagining her final moments — almost a posthumous vigil in my mind because she didn’t get to share time with anyone.

During my death midwife training I organically paired up with a pulmonary nurse who held the Ipads for countless (though she kept count with a jar full of stones until the weight of her stones became too heavy for her heart) final goodbyes during Covid.

She is also an amazing woman, and I hold dear her stories and the image of her holding vigil and protecting the dignity and rights of the dying in her care. So many of us don’t have to die alone simply because an exhausted nurse instinctively knew it was someone’s right to be witnessed as they took that final breath.

Beautiful.