Last week I met with a special family, along with Dr Monique and Hannah, our clinical associate.The family consists of a mom, Elaine, who has been receiving chemo for six years for her pancreatic cancer, her husband, and two of their daughters. Elaine has had an amazing outcome if we compare this to life expectancy of most pancreatic cancer patients. The family met us for coffee because Elaine’s oncologist did a very brave thing: he told her that the chemo no longer works and that she is out of treatment options. Elaine is a planner, and now that she knows her cancer will start progressing, she wants to make sure she chooses the best place to spend her last days for the sake of her children, her husband and herself.
Many people want to spend their last days at home. There are definitely many reasons to want to do this, but sometimes people choose this option because they do not understand the alternative to flying solo in your own environment, or because they think the only options are a hospital or trying to figure things out on their own.
It was great for us all to chat with Elaine and her loved ones, while she is still well and so that everyone could share their feelings and think deeply about what they really want and how to best achieve that.
When someone you love is seriously ill, the idea of an admission to an inpatient palliative care unit can feel like you are not willing to do the hard work yourself at home. It might feel to you like you are failing them. Elaine’s daughters said to their mom that they feel as if they owe it to her to do the care at home. They feel that doing it with her in the house they grew up in will give them a bit more control.
This is true in certain ways, but it also would mean that Elaine’s husband and daughters would have to manage home carers, visitors, organise meals for carers, manage the continuous medication changes and pain control adjustments which are very much part of end of life care, and as there is seldom more than one carer provided, the family would be hands on in ablutions and other daily living situations.
This may sound simple, but it is not something most people actually know how to do, especially with a frail, weak and immobile patient, which can often make a patient feel guilty for making their loved ones do this.
In reality, inpatient palliative care would mean that Elaine is supported by her family, while retaining her dignity. She will be comfortable during a time where her needs are more complex to manage, while her loved ones can receive love and support too, rather than trying to manage these needs at home. Unlike standard in-patient units in hospital, in the palliative realm, we focus on the needs and care of the family as a whole.
While every admission and every care setting is different, and this was explained to Elaine too, there are some basic things that everyone can expect when they come to us:
A focus on comfort and quality of life
Palliative care is not about giving up. It is actually just being honest about where you are and making wise decisions to serve you and your loved ones.
On arrival, the incredible team will work to understand where the person is at and what they need. This often includes managing pain, breathlessness, nausea, anxiety, restlessness, constipation, fatigue, poor sleep or confusion. The clinical team, together with the palliative care doctor in charge, can change meds, add additional measures for comfort and make sure proper pressure care is done if needed. The clinical team constantly review and adjust this plan as needed while the patient is with us.
Comfort is defnitley not only about the physical symptoms. A very large part of what we do here is making the patient and the families feel safe, heard, loved and respected.
A care plan is designed to suit the patient, not the care team.
No two people – and no two families – experience serious illness in the same way. These are the kind of questions we consider to get to know the individual behind the diagnosis:
• What brings you comfort?
• What worries you most?
• Who are the important people in your life?
• What are your beliefs, values and wishes?
• What would a peaceful, meaningful day look like for you right now?
These conversations help the team create care that is deeply personal, rather than just a routine in a facility. We make sure that people get to see their pets, have tea in the sun with an old friend, play a game of Canasta , speak to loved ones overseas on video-calls, eat meals they love, have their nails painted or hair styled. We even arrange braais and beers much more often than we ever thought we would. In palliative care we aim to focus on the physical needs of our patients alongside their emotional, social and spiritual needs. We take a truly holistic approach and care for the whole person.
A multidisciplinary team around the patient
In an inpatient palliative care unit, care is usually provided by a team rather than one person. We work with nurses, doctors, clinical associates, carers, social workers, counsellors, doula’s, therapists, spiritual-care providers and other support staff ( our dogs Max, Jack, Bailey and Frootloop are very much part of the comfort offered, and the three cats, Meenie, Tilly and Princess Leah bring an extra layered of feline care )
Each person brings a different kind of colour and texture to the tapestry of care. Nurses and doctors may help manage symptoms and treatment plans. Care staff assist with daily comfort and personal care, like bathing, abluting and guiding the rest of the team on how the patient is generally doing, as they tend to know them better than anyone else. Social workers or counsellors can help families cope with the anticipatory grief, practical challenges, like changing banking apps and organising advance health directives if they are not already in place, emotional and sometimes legal concerns. Spiritual support is also available. We engage with all types of clergy and have many support services available to the secular population’s needs.
We all share the goal of making sure someone like Elaine does not ever feel like a collection of symptoms or tasks to be performed. Our patients have to remain a human being with a story, relationships, preferences and dignity.
Family involvement and communication
Families and friends are all an essential part of palliative care. They know the patient best, and nine times out of ten, they are carrying a huge emotional burden and often have compassion fatigue.
Like we did with Ellaine’s loved ones, we encourage family meetings repeatedly during the journey. Right from the beginning before the patient is even on the last stretch of the palliative path, we encourage conversations in which families will be given opportunities to ask questions, share fears and take part in discussions about the care plan. A family meeting can be especially helpful when there are difficult decisions to consider, when there is conflict, when relatives need to understand what is happening, when there is denial, and to get a clearer picture of what is involved. It is incredibly healing for everyone when there is a safe space to talk openly about wishes and as well as their fears.
Good communication matters. Families should feel able to ask:
• What are the main goals of care right now?
• What symptoms are being treated and are we still treating other chronic conditions?
• What changes should we expect?
• What happens if our loved one stops eating and drinking?
• How do you manage the pain as the disease progresses?
• How can we best support our loved one?
• Does palliative care in an in-patient unit mean the patient can never come home?
A calmer, more homely environment
Unlike an acute hospital ward, at both lodges our environment is homely and beautiful. We have comfortable private rooms (and even rent out rooms to loved ones, or give them the option to sleep in the patient’s room). We have beautiful spaces for visitors, quiet sitting areas, colourful gardens, good food, and even rooms for families themselves.
Small, familiar things can make a huge difference: a favourite blanket, photographs, a special playlist, a familiar scent. We find that having friends and loved ones around to really visit and spend time with patients instead of frantically trying to manage their care provides an enormous sense of safety and assurance for everyone involved.
Support for practical matters too:
We tend to forget that even though you are dealing with a serious illness real life does not stop. Many people may be dealing with financial pressures, other caregiving responsibilities like picking young children up from school, work commitments, unfinished personal affairs or difficult decisions about the future.
Palliative care, especially the brilliant social workers and death doula’s we deal with, can help families identify these concerns early and help them deal with them. In South Africa, palliative-care organisations have also highlighted the importance of patient autonomy, confidentiality, access to pain relief, social support and help with legal or practical issues that can add to a family’s distress.
It can be helpful to ask about documents such as advance care plans, medical-aid requirements, medication arrangements, a will or other personal affairs — but these conversations should always happen at the patient’s pace and with sensitivity. Doing this in a rush or under pressure can change the last season of a person’s life into a traumatic time for all, instead of the beautiful exit it can be.
The most important thing to remember
An inpatient palliative care unit is a place where the question changes from, “What else can we do to fight the illness and prolong our person’s life?” to, “What can we do to help this person live as beautifully and meaningfully, and with as much dignity as possible?”
Families do not need to have all the answers before admission. In fact, in most cases, palliative journeys evolve organically. It is okay to arrive with more questions than answers, genuine concerns and a desire to do the best you possibly can for someone you love.
Palliative care is not about taking hope away. It is about holding space for a different kind of hope: hope for comfort, connection, relief, dignity and precious time that feels meaningful.
Names and identifying details have been changed to protect patient privacy.