End-of-Life Care: A Visitor's Guide
Those of us in hospice care see one's final days as a continuous part of life's journey, not a land wholly separate and apart. The language and customs are familiar, not foreign, and the travelers are not strangers but are essentially like us, among us, in fact us.
For many, however, visiting the landscape of death and dying is -- understandably -- difficult and painful, and puts us at a loss. We want to be there for a friend, colleague, or family member in those final days, weeks or months. But often we're unsure what to expect, what to do or say, how to navigate the largely unfamiliar terrain.
In addition to the terrible sadness of knowing you will soon lose someone close to you, visiting a friend or loved one in the final stages of life forces one to confront his or her own mortality. No longer can you reject or deny it, a coping strategy that many of us hold in order to go on living.
Being in the company of someone who is dying also confounds our powerful human impulse to make things better, to take action. "Death is the ultimate no-fix," as my colleague, the Rev. Paul Metzler, D.Min., Director of Community and Program Services for Visiting Nurse Service of New York Hospice Care, says. "If a friend has a marriage problem or financial trouble or broke his ankle, you can help. You can give advice, loan money, help him get out of the car. But if a friend or colleague or cousin is dying, there is no fix you can offer."
In this post, I draw on my experiences as Director of the Hospice Care program at the Visiting Nurse Service of New York (VNSNY)--as well as on those of colleagues and people who recently lost loved ones--to explore the end-of-life landscape and to offer strategies for offering support and comfort in a loved one's final days.
What we strive for in hospice is to be present, to create a genuine human connection that is honest, authentic and unforced. How do you do that, especially during a visit so emotionally challenging and, for many, so unfamiliar? That is a question that grief counselors, chaplains, pastors, social workers spend their careers answering.
"Listen," advises Peggy Neimeth, a social worker who has done a lot of work with hospice and who recently lost her husband. "Listen to what the person's feeling. Are they frightened, do they want to reminisce, do they want to talk about day-to-day details of work? Listen actively, perhaps prompting them: 'Would you like to tell me more about this?' Or the opposite, 'Sounds like you don't want to talk about that.' Help them feel you really are there for them."
The words of advice that Vincent Corso, M.Div, LCSW, VNSNY Hospice Care's Spiritual and Bereavement Care Manager, offers his staff may also help lay people be better prepared when visiting a dying loved one: "I suggest each person does that last-second check-in before ringing the doorbell. 'Where am I? What am I about to do? How am I feeling?' You want to be sure that what you're bringing into the house is authentic--unburdened by your own baggage."
You may not be able to jettison your fears and anxieties entirely, but at least you will become more aware of them and perhaps be better able to compartmentalize. "Let that check-in lead to putting parenthesis around what you might be carrying," says Paul, "so it's to the side and not in the way."
Amid the emotional considerations, there are also practical considerations. Always ask permission to visit. Get a sense, from the patient or a close loved one, whether or not the patient wants company in general, and, specifically, if a particular time is agreeable.
The Power of Touch
The deepest and sometimes simplest way to be present is through touch, which can range from a gentle brush of the hand to Reiki (a Japanese technique for stress reduction and relaxation that involves the laying on of hands) or other nontraditional hands-on healing modalities.
Peggy Neimeth recalls her 92-year-old mother's final hours, lying in bed, her eldest granddaughter stroking her hand. "Although my mother was blind and suffered from dementia and could make only repetitive sounds, I'm convinced she knew her granddaughter was there," says Peggy. "She fluttered her eyes, and you could just tell she was at peace."
Vince Corso explains that "People who are ill may well feel that they are not touchable, not loveable. Touch is a very important nonverbal affirmation of their humanity, their value."
Touch might not always be welcome, especially if there is physical pain involved. As with everything else in this situation, take your cue from the person you're visiting. Ask directly: Mind if I hold your hand? Or introduce the subject lightly when you first come into the room: Let me go wash my hands from the subway, before I give you a hug.
I Just Can't
What if, in the end, you feel emotionally unprepared, simply unable to visit? "I remember a few friends of my husband's who didn't come," says Peggy. "They were so frightened, they couldn't do it. And, in the end, it was probably better for my husband."
In that case, send a card, a plant, a book -- along with a note. This is a way of expressing emotion while controlling its flow. A simple I'm thinking of you. Or, if you can go a step further, I am so overcome that I feel it would be better if I didn't visit. But I value our years together as colleagues (or friends or cousins), and I will always remember_____________.
Practical assistance is also vitally important. Offer to do laundry, prepare dinner, watch kids, walk the dog. Paul recalls when he and neighbors in his apartment building signed up on alternating nights to make dinner for the family of a woman in the final stages of breast cancer. "This was continuous hope and caring from the sixth floor," he says. "It was our way of surrounding the family with support, without having people knocking on the door all the time."
A young mother who recently died of liver cancer in suburban California was supported in her final months by a neighborhood Laundry Brigade, which picked up a heaping bag from the front stoop every third morning and returned clean, folded clothes and linens before nightfall.
"A bedside visit may not be what you're capable of," says Vince, "but anyone can do a load of whites or a load of darks."
Dos and Don'ts
- Ask permission to visit and respect the right to privacy
- Perform a self check-in before ringing the bell
- Be present in the moment and honest in your interactions
- Engage in active listening
- Connect through touch, holding a hand, giving a hug
- Offer assistance with daily chores
- Make assumptions about someone's need for company
- Expect to change how someone feels
- Give false reassurance or forced platitudes
- Put words into someone else's mouth
- Bring your own agenda to the conversation
- Cut off contact; if you cannot manage a visit, send a note or card
If you have your own helpful suggestions for being with others during end-of-life, please share your comments here for others to consider.