Hospice is care of the dying or the incurably ill. focusing on palliative care for the terminally ill – generally in their last days. According to the Encyclopaedia Britannica, hospice dates back to the Middle Ages referring to places of charitable refuge offering rest and refreshment to pilgrims and travelers. After World War II, the idea that the dying required specialized care began to take hold and from there the realization that aggressive medical procedures to prolong life might only cause more suffering soon changed how we saw death and dying.
I believe that palliative care is a human right. The Universal Declaration of Human Rights affords us in Article 3 – The right to life. And in my interpretation, that means the right also to determine the course of a life and thus the course of death. In the Preamble, the General Assembly emphasizes “fundamental health rights” and “the dignity and worth of the human person.” And hospice can provide dignity, recognizing the worth of each individual.
The United Nations Committee on Economic, Social and Cultural Rights in it’s General Comment on The Right to the Highest Attainable Standard of Health of article 12 of the of the International Covenant on Economic, Social and Cultural Rights specifically states that parties are “under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons . . . to preventive, curative and palliative health.” Additionally, the Committee asks that “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”
The World Health Organization sees “pain relief and palliative care for [patients with “life limiting conditions”] and their families as an urgent humanitarian need.” It defines palliative care as care that:
- Affirms life and regards death as a normal process.
- Does not hasten or postpone death.
- Provides relief from pain and other symptoms.
- Offers a support system to help patients live as actively as possible right up to their death.
- Integrates psychological and spiritual care.
- Provides a wider support to help the family cope during the patient’s illness and their own bereavement after death.
The WHO has even published a document on “Essential Medicines in Palliative Care.”
And in seeing this humanitarian need, the WHO supports World Hospice and Palliative Care Day (This year on October 12, 2013). This Day aims to:
- Share our vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
- Raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families.
Thus, I firmly believe that palliative care is a human right and to realize this right we must respect the right to die and to do so according to one’s wishes, including the provision of hospice care.
Hospice as in the Middle Ages remains a refuge for those seeking rest and care to those in their journey of death.
Hallmark Cards for Hospice:
Hospice has been on my mind recently, particularly with the loss of my grandmother last November, just before Thanksgiving – when we were all Thankful for her wonderful life and then the relief from pain.
Then arose a discussion sparked by one of TEDMED’s Greatest Challenges on End-of-life care – Hallmark does not have any cards specifically for hospice. How can this be? And the more I thought about it, the more I thought about my connection to cards and letters.
I’ve always loved writing letters. I love sending cards – usually from Hallmark – for St. Patrick’s Day to Christmas to random unknown holidays or just because. I love receiving cards. I love the messages sent and the meaning that someone is thinking of you, loving you, taking time for you.
I’ve written letters and sent cards since I was a child. And then the meaning of letters and correspondence in a society of internet communications took on an even greater meaning for me in July 2006. That summer I was in Amsterdam studying international human rights law. I visited Anne Frank’s house. But there was another special exhibit in another museum featuring many of Anne’s letters – both from and to her. Letters that expressed parts of Anne that I couldn’t have imagined but related to in many ways. And I thought, had we never found her diary – these little pieces of herself would still exist, spread around the world, still making an impact and carrying the memory of her. And thus letters took on a new significance.
Cards are letters. They are pieces of our hearts shared with the world. They are messages given not only to share love, concern, laughs, celebrations but to document a life. As I receive a card, I get to hold someone. I can keep their thoughts and carry them with me even in rooms that are black and dark.
My grandmother died in hospice as I mentioned. There were no hospice cards for her when I wanted so badly to write her in her last days because I couldn’t be with her in person.
My grandmother, like me, loved sending cards. She too sent cards for every occasion and every once in a while, a “good kid” card with $5. As her family cleaned her house, they found that she kept every one of my cards and letters. Every last one. My mother gave me back those letters as a Christmas present and I’ve never received a present more precious. But one card was missing – a last note, a card for hospice.
My grandmother would have kept close to her a hospice card. But I had none. My stationary wasn’t right and I hadn’t the right wording and in the end I only had an email for someone to read to her – an intangible message.
Why can’t there be hospice cards? Cards that allow us to share parts of ourselves with those we love. Cards that they can grasp. Cards that will last beyond a life lost. Cards that honour those suffering. Cards that give respect and dignity to the dying? Cards and letters that offer palliative care, a human right. Written sentiments recognizing the suffering and sadness of dying. Do those in hospice not deserve to have their entire journey recognized, their life documented, their worth acknowledged? Through letters and cards, we live on forever. Without hospice cards, our story is incomplete.
If you believe that Hallmark should have hospice cards please sign this petition. Let us advocate for the realization of a human right.